Following an abnormal smear, I was referred to the gynaecological oncology centre at Addenbrookes, Cambridge where, in 2009, an ultrasound scan revealed a complex 10x7x6 cm mass believed to be ovarian in nature. Despite being slim, I had no outward sign that this mass was inside my abdomen.
I had blood tests which showed elevated tumour markers and then had a CT scan. It was believed I had an ovarian cyst and I was booked in for surgical removal. I had keyhole surgery in January 2010 where thankfully my surgeon recognised that what I appeared to have was an appendiceal tumour which had spread to my ovary. He had the foresight to call another consultant to look at the mucus which appeared to be in my abdomen and thankfully it was recognised as PMP and a biopsy confirmed this. The tumour, appendix and right ovary were removed by keyhole surgery and I was referred to Basingstoke. I then went to discuss the findings with Mr Cecil, one of the senior consultants at Basingstoke, and after discussing my options we decided, given that all evidence of the tumour and mucus had been removed, it was in my best interests to place me on a watch and wait and have yearly scans and blood tests. I was told that there was a 95% chance of the cancer returning as I had not had a chemo wash.
My first-year scan was clear. My second-year scan, unfortunately, showed recurrence around my liver. I had a laparoscopy in January 2012 which confirmed that the PMP had grown and a decision was made that the full ‘Sugarbaker’ surgery should be undertaken.
In March 2012, I went into Basingstoke for surgery. The unit and team there are wonderful. The surgical incision runs from breast bone to pubic bone and I later counted an impressive 60 staples. I have no belly button. They removed my omentum, peritoneum, gallbladder, left ovary, womb and cervix, part of my bowel and the membrane around my liver. They found widespread evidence of the disease in both my pelvic and diaphramatic areas which were burnt off. All traces of the mucus were removed and I had the heated chemo bath whilst in surgery and a further four days of chemo fed directly into the abdomen whilst on the high dependency unit.
I cannot lie, the surgery and recovery was tough but I think it was tougher on my family watching me go through such a traumatic surgical procedure. It is important to remember that everyone recovers differently and 12 weeks after surgery I was driving and 20 weeks after surgery I was back at work full time.
I have experienced a huge range of emotions since initial diagnosis. The internet can be a powerful tool for research but can also provide misleading information, which is why this charity and the Facebook forum are so useful. It has been such a relief to communicate with those who know how I am feeling. For me I had no symptoms other than lethargy and stomach pain but I believe that I have had PMP for many years: In 2006, I was told I would never have children as I had ‘gunk’ in my stomach. That consultant never investigated that so-called ‘gunk’ and I have as a consequence been unable to have children. I only now wish I had sought a second opinion back in 2006.
For me, the most difficult psychological aspect of this disease is the fact that I will never be able to conceive a child. However, I have learnt what is important in life, that you take every opportunity that is given to you, that you find out who your true friends are and to remain positive throughout. It is amazing how resilient human beings can be and how much determination and inner strength you can find when called upon.
In case you missed it...
An ultrasound showed cystic masses in both ovaries
My initial symptom was a tiny pain (feel like pins and needles) from my lower abdomen, it only last a couple of seconds, it came and went. I was a healthy, active mum filled with energy and a busy lifestyle.
I had shortness of breath and my sides ached
I had an ultrasound which showed a large tumour which was confirmed by MRI. I had surgery at my local hospital to remove a tumour the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
Jill’s Book Review
I was really positive about my recovery after the major operation for pseudomyxoma peritonei (PMP). I took things really slowly and took good care of myself.