On 25th June 2014 my Mum (Jeanette Edwards) was diagnosed with Ovarian Cancer. This is her story in her own words:

“Jeanette Edwards
Age 52
Diagnosed Ovarian Cancer Stage 4 25th July 2014
(there is no stage 5, stage 4 means that it has spread to other parts of your body)

First an overview of Ovarian Cancer. – a /not very well know cancer. Smears do not find ovarian cancer these are for cervical cancer only.

Ovarian cancer is invariably diagnosed at a late stage; this is due to the fact there are no unique symptoms.

Signs; -
Bloating
Weeing a lot
Feeling full
Back ache

All signs of old age, menopause
All more often than not put down by GP as irritable bowel syndrome

It is more common in ladies over 50, but can be developed by younger ladies.

Currently there is no screening programme developed for this cancer, a blood test can indicate there could be a problem, this is called CA125 test, which shows the protein level, normal should read at max 35, if you have ovarian it can go into the thousands, but it can also indicate an infection or something so this is why it is not used as a screening programme.

Approx. 14,000 ladies are diagnosed with ovarian cancer mostly at stage 3 or 4. Approximately 7,000 die each year, that is not 50% of the 14,000 necessarily

Old studies show that stage 3 and 4 have a 10% chance of surviving 5 years. I have no updated information since the introduction of new drugs.

There is no cure for ovarian cancer stage 3 and 4 as the nature of the cancer currently cannot be eradicated, however with the introduction of new drugs, it is often referred to as a critical illness, which can be controlled by various means, chemotherapy and various other drugs. It is an ongoing battle.

My story

In April 2014, I had a heavy bleed, post menopause, I googled this and saw it was important to go to the doctor. Which I did.

GP did certain bloods tests including my CA125, which was 179, she sent me an abdominal and pelvic ultrasound. Nothing showed, and the radiologist said she expected I would just have an eye kept on me. This was reported back to GP

GP was not happy with this she arranged a CT scan again nothing showed, she was still not happy and insisted I see a gynaecological oncologist didn’t want to see me as there was nothing to look at.

GP insisted, I had a meeting and he agreed due to family history to remove my ovaries, (we have high levels of Breast cancer on my mother side)

In between this a lump came up in my neck which was biopsied results sent to oncologist.

At my meeting he told me that I have cancer in my ovaries, tubes, uterus, cervix and that had spread to my lymph nodes in my neck. They did not know the origin so not sure what chemo to give me.

I went to get a second opinion from Professor Ledermann, professor of medical oncology at UCL cancer Institute and Director Cancer Research UK and UCL cancer trials Centre ( as we believed this is what it was) we were right.

At our meeting we discussed my family history, and he was convinced I was *BRCA and he was currently involved in a trial called SOLO trial, being funded by Cancer Research and was aimed at BRCA. I needed to be tested. And if I was BRCA he would put me forward for the trial.

It was confirmed I was stage 4 very ill but all was not lost, as there were lots of drugs now and in development.

I was referred to Harefield mount Vernon hospital, under professor Ruskin, there he did an MRI and found I had a 5cm tumour in my cervix which had been seen before. I was but on chemo immediate, Carboplatin and Taxol, as I was so ill he decided to give me Taxol every week, (you usually have these drugs every 3 weeks) this is called dense dose, which research has shown can increase survival rate, he also added a drug again developed with Cancer research called Avastin, I had every 3 weeks this stems the blood supply to the cancer cells.(as I had been put on Avastin I could not go on the SOLO trial if I was BRCA as it would confuse results)

I had this for 6 months at the end of this my ca125 was 21 within normal range and the CT scan showed no evidence of disease.

I had a full hysterectomy and other samples taken from within and they could not find any cancer cells, so the drugs had done their job.

I was in remission not cured January 2015.

 Since then I have Avastin which is administered every 3 weeks intravenously to try and extend the return of my cancer.

In February this year my CA125 started to rise which indicates the cancer cells are making a move. I had a CT scan nothing showed, so we agreed to monitor the situation.

Keeping me on Avastin to try and keep it at bay, since then to this day 18th May, my CA has bobbed from 30-36, so hopefully Avastin is doing its job. My next scan is July to see what is happening.

Research has shown that starting treatment for reoccurrences too soon, does not prolong your life just gives you a poorer quality of life.

When the reoccurrence causes issues there are a number of drugs for me including the SOLO trial drug which was licensed in 2015 under the name of olaparib, the trials Professor Ledermann was running when I first met him. This drug is aimed at BRCA people as it alters the DNA structure that feed the cancer cells. Research has shown that it can add 5 years to the life of Ovarian Cancer suffers. You take 16 pills at home, with currently very few side effects, heaven

In September 2014 I was tested to see if I have a muted BRCA gene, we all have the BRCA gene including men and sometimes they have changes this is called BRCA positive, there are 2 types of BRCA 1 and 2, BRCA 1 cancer risk increases at an earlier age, BRCA 2 effects older people which increases the chances of you getting certain cancers, in women it is breast cancer, ovarian cancer and skin cancer, in men with BRCA 2 it is breast cancer and prostate.

This is hereditary, it appears I inherited it from my mother. I was given a letter to circulate among my mother’s family offering them the test, so far all those who have been tested do not have the muted gene.

I have 2 daughters my eldest Charlotte 22 was tested last year and she has the muted gene, she is BRCA 2 which means she has an 80% chance of getting cancer. She has been advised to have her ovaries removed by the age of 35 to prevent ovarian cancer. She will also have the chose to have a double mastectomy to prevent breast cancer. She is quite pragmatic about this, as she is sure with research things will improve for her and everyone else.

I have also been told that I should consider a mastectomy.

My blood has also been stored to test when new drugs are developed

There are 2 ways of looking at being BRCA, through research they have identified what has caused my cancer which is a good thing as only by identifying it can they cure it.

Research knows exactly what they are targeting, every day they are running trials targeting this gene, Olaparib was developed by Cancer Research, at the moment they have to prove you respond to normal chemo first before they are allowed to give it to you and you also have to have had at least 3 reoccurrences, as with all new drugs it is very expensive, but I can see in the not too distant future the ability to take 16 pills a day at home instead of going into hospital for chemo the sickness it causes, the losing your hair etc.

The bad thing is the increase in risk, but a least if you go to the doctors and say there is a problem they will listen.

If it wasn’t for research I would not be here, if there had been BRCA testing when my mum was ill she may have lasted longer, I would certainly have not had cancer as I would have had my ovaries removed and therefore not developed breast cancer.

Knowledge is power.”

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