"Ovarian cancer was an invitation to rethink my way of life."

Hello Nadine, you have ovarian cancer and wanted to share your story.
First of all, could you tell us more about yourself (who you are, your hobbies, your profession, family life, etc.)?

I'm about to turn 60. I like: life in general, people, nature. I enjoy reading, writing, learning, discovering and broadening my inner and outer horizons. I lead health and nutrition workshops and healing circles from the heart. I enjoy going to conferences that cover themes related to health and personal and spiritual development..

I am the mother of three children who are the greatest gifts of my life! My oldest son is 38 years old, my daughter is turning 36. My youngest child will soon be 25 years old. I am the grandmother of three grandchildren. I'm lucky to have a good relationship with my children.

My professional career has been rich and varied. It has led me to provide support and coaching in personal and professional integration. I also opened an organic food store with my spouse because we are particularly passionate about the organic sector.

I obtained a BTS degree (a French level 5 diploma) in Economic, Social and Family Studies at the age of 43 and continued with training in the field of health (nutrition) and personal development.  Having skills in the theatre and the running of writing workshops, I used these tools to encourage self-expression and public speaking. I have also responded to calls for projects within the framework of the National Nutrition and Health Programme.

I have a need to innovate and I hate monotony. When I've been working in a field for a bit, I feel the need to renew myself, I enjoy teaching, training and guiding. 

Body language quickly became a passion for me. I read a lot of books on psychosomatics and body language which allowed me to welcome cancer with deep curiosity and a philosophical perspective.

How did you find out you had ovarian cancer? What were the first symptoms?

In a rather curious way, I was guided by my own intuition through a strange vision, which puzzled me for more than a week. After eight days of wondering about it, I put my hands on my lower abdomen without thinking just before going to sleep and there I felt a huge ball under my hand, a ball so big that I felt like I was 4 to 5 months pregnant: I immediately connected it to the vision of the fluffy bobble that I had seen! 

I made an appointment the very next day with my doctor because I felt something was wrong. 

The doctor ordered an ultrasound, which revealed a large cyst on my right ovary. The latter was operated on a few weeks later under laparoscopy. I also had a blood test to check for the ovarian cancer biomarker, the infamous CA-125* protein with a negative result.

*The CA-125 level is considered normal if it is below 35 U/mL. CA-125 increases outside of any pathological condition during menstruation and during pregnancy.

Analysis of the diseased tissues and the areas operated on by the surgeon revealed the presence of a tumour on the left Fallopian tube, which had been hidden by the right ovary.

I was very lucky to have a warning cyst. It is a sign that the body really has its own intelligence; when there is a disorder somewhere, it creates other forms of imbalance which create signals by their abnormality! 

Starting in early 2015, I started noticing an increased need and frequency of urination. With a 23cm diameter cyst, I welcomed the operation with eagerness and a sense of relief, but part of me knew it wouldn't be that simple!

Is there a history of cancer in your family?

My paternal grandfather died at the age of 74 from colon cancer. I've been monitored for this since I was 22 years old, when I had a large intestinal polyp removed, the biggest one in the surgeon's career, according to him!

I also had a genetic test done which showed that ovarian cancer was not in my genes.

How long did it take to diagnose your ovarian cancer? How many doctors did you see?

I had surgery on 9 July 2015 and the diagnosis was confirmed by biopsies on 27 July, 18 days later. I met with three doctors: my GP, the radiologist and the surgeon.

How were you told you had cancer?  

My doctor, whom I had contacted in the morning to find out if he had the biopsy results, called me back in the late morning with the biopsy results.

As I felt embarrassed, I told him I was sitting down and knew it was cancer, and he confirmed my hunch with relief. 

And how did you feel about the news?

It was no surprise, given the context! I was a bit unsettled by the idea of my own finitude, but after 5 or 6 days, I decided not to let myself succumb to this idea. I realised that we are all mortal from the day we are born - we all come to an end one day. In the end, it didn't make much difference to my story, and I felt strongly that I needed to enjoy life rather than torturing myself with unnecessary fear.

I felt the need to be alone and I went to the seaside, to my aunt's house, who let me stay there. I felt the need to find myself and to isolate myself in order to reflect on the meaning of this illness in my life

Are you satisfied with your care pathway (consultations, diagnosis, treatments, etc.) and with the information you received about the disease?

My GP was caring and comforting. On the other hand, the surgeon was really cold and lacking in empathy.
At the second appointment prior to the second operation, he told me that if everything was alright with the samples and biopsies, we would "close the case" and the "chapter"!

At the third appointment and post-operative visit, he told me that a committee had met and recommended that I undergo "preventive" chemotherapy.

I told him that I needed to think about it, all the more so as it was not at all in line with the information he had given me beforehand. 

As soon as I walked through the door of his office, he said, "See you on Monday for the chemo port implant!" and his secretary immediately set me an appointment to see an oncologist. I had a hard time dealing with this pressure and the lack of consideration for others. 

I didn't show up for the appointment because I felt that the prevention wasn't really necessary, especially since the samples were all healthy. I also consulted my GP, who agreed with me.

What treatments and care have you received?

Two surgical operations, one of which was a preventive operation with thoracic curettage, renal hysterectomy and removal of the omentum.

Did this cancer treatment and care have any health consequences? 

I was re-operated on 22 August 2015 and I went back to work on 4 January, just 4 and a half months after a second major operation. It was a bit too soon considering the fatigue and my body's real need to recover. 

It took me more than a year to regain some of my energy, some flexibility and the physical strength to get up sometimes. An open belly from the pubis to the navel does not regain its tone in a year!

What impact has this had on your life?

Ultimately: loss of employment and disastrous impact on my romantic life, particularly because of pain after the hysterectomy and probably also because of my hormone levels.

Are you currently in remission? 

The initial ovarian cancer has spread to my liver, peritoneum and omentum. 

The liver tumours were first discovered in February 2018 during a gynaecological visit and a CA-125 blood test. This marker had always been negative until that date. I opted, at that time, for alternative approaches and a ketogenic diet (a very low carbohydrate diet balanced by lipid supplements), and from February 2019 to October 2019, I remained hostile to radiotherapy and chemotherapy, too many deaths around me due to cancer and heavy treatments.
Then, in October 2019, I had a recurrence of an abscess on a diverticulum as well as the beginning of scarring after the laparotomy. During the surgery, I learned that the initial ovarian cancer had spread to the peritoneum, in addition to the liver.  

So, after two months of reflection necessary for my progress, I agreed to undergo chemotherapy.

And how are you feeling today?

I feel very good mentally, at peace and confident for the future. My healing is a path, a process. My primary goal is to live a pleasant life in order to promote healing, I don't care about statistics and verdicts of any kind. I choose to trust my ability to heal myself with the means at my disposal but also by taking control of my diet, my state of mind. I practice relaxation and meditation.

Can you tell us more about your diet?

The ketogenic diet* is beneficial in healing cancer, but eating too many vegetables, especially raw ones, has twice caused me to get an abscess on a diverticulum. This abscess had to be operated on in October 2019.  

Diet is an essential factor in the healing process, in itself it provides an essential and complementary support to treatment - however, in time, I was confronted with the limits imposed by my intestine. I have since modified my diet by eating more cooked vegetables to help my intestines, and to limit the intestinal inflammation caused by too much cellulose.

*The ketogenic diet is a diet in which lipids (fats) provide the bulk of the calories (70 to 80%, or even 90%) while carbohydrates (sugars) are consumed in very small quantities (maximum 10% of calories). When the body is deprived of carbohydrates in this way, fats become its main source of energy (whether from meals or from reserves) and some of them are transformed into ketones, hence the term "ketogenic". Ketones can be used as fuel for various organs, but they are mainly directed towards the brain.

And how do you see the future?

I am serene and confident, my intuition continues to guide me, I have new projects like sharing my experience on how it is possible to live with cancer and that it is possible not to be caught in the clutches of fear. There are ways to achieve inner peace, just as there is a path to healing. To heal is to treat a whole, a being, a state of mind. 

Are you affected by any other conditions? 

Liver tumours, peritoneal carcinomatosis and epithelioid tumours are in fact one and the same pathology due to metabolic imbalance, I cannot distinguish between the different ill parts of my body.

Are you supported by your friends and family?

I am fortunate to have, through my side activities, a large network of caring and supportive friends and relationships. I have regularly turned to this network for mental support to lighten the burden of my chemotherapy. My children and family are close and my spouse has been a great physical help with the housekeeping when I was at my worst between November and December 2019. 

You have to learn to love yourself, and feeling the love of others helps foster this self-acceptance. Feeling loved and appreciated gives strength and motivation to live!

There was, of course, a somewhat difficult period during which I doubted my ability to overcome all these challenges. And then in the end, faith, life and my curiosity got me back on my feet. I am sure that all this is not by chance and something will come out of it, I am convinced of it.

Do you talk a lot about your illness with your friends and family?

We talk about it. I answer their questions to give them clarity and reassurance. I tell them the results of my tests. We show affection for each other, and then we move on. It's important that life doesn't revolve around my illness even if it limits us somewhat, it doesn't define us. 

Do you think that regular screening for ovarian cancer should be performed in the same way as for breast cancer?

Screening is an important point. And it would also be interesting to inform people about the warning signs of the most common cancers.  Having worked with cancer prevention associations, we often talk about breast and colon cancer, the others are more neglected.

And to close, do you have any advice to share with others living with ovarian cancer?

The first thing I would tell them is, "Don't be afraid!". This disease is not here to kill you. On the contrary, it is an invitation to cure you. It is a deep call for help from your body, from your BEING, an invitation to re-examine your way of life or your bad habits. It is an invitation to take control of yourself. You must learn to become your own PRIORITY!

Don't be embarrassed at the idea of getting help. The day you were born, a doctor, nurse or midwife was there to help you come into this world. Well now, look around you for people who will help you to be reborn this time with confidence and kindness.                                                    

Also, if you don't get along with your oncologist, look for a new one, it's really important! Your healing depends on the partnership you have with your oncologist. It is important that you walk hand in hand, so to speak, and that you have the right to take the initiative for yourself, there are complementary treatments available.  This is an opportunity to open yourself up to new things and to what speaks to your intuition. Trust yourself. Love yourself and be your own best lover!

Many thanks to Nadine for agreeing to share her story on Carenity.
And you, how do you cope with your illness?

Feel free to discuss in the comments, we are all here to support one another!

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Take care!