Hi. My name is Anne and in May 2020 at the age of 61 I started bleeding, after going through the menopause about 10 years prior to that. Obviously alarm bells rang and I contacted my GP who immediately referred me for an ultrasound scan. I could see by the sonographer's face that things weren't as they should be and I was referred for blood tests, which included a CA125, the test which measures the protein (cancer antigen) that shows in the blood. The normal level is between 0 and 35 and I found out in a phone call from the hospital a week or so later that mine was 707, and also complex cysts had been found on my ovaries. Although they could not "confirm" it was ovarian cancer that was definitely what was indicated. A CT scan was arranged and after that I had a phone call to say that a 7 cm mass had been discovered on one ovary and 4cm on the other, and there were various enlarged lymph nodes throughout my body, including my neck. I was then referred for a needle biopsy where they clipped a little bit of the lymph node in my neck for analysis.
The waiting for final results is absolutely the worst part of the whole process. I think it was about 7 - 8 weeks before the first referral from the GP to actually having a formal ovarian cancer diagnosis. This was delivered on the phone, during the pandemic, by an oncologist, along with my cancer specialist nurse. I felt totally deflated, scared and unable to process all the information I was being given. I was told the Multi Disciplinary Team of experts (MDT) would meet and discuss my case, along with many others, and a treatment plan would then be put in place. After that happened I had a further phone call from my oncologist who confirmed stage 4B ovarian cancer and that the MDT had recommended "palliative" chemo, and I could choose whether I just had one type (Carboplatin) or combine it with another (Paclitaxel), which would mean losing my hair. I don't know how I was meant to make that choice, I was looking for guidance from them on what would work best, whatever it took! I would also receive Avastin at the same time. This drug is used to starve the tumour and prevent growth of new blood vessels. I asked if I would have an operation and his blunt answer was "no". Talk about feeling written off from the get go! I had never felt so low!
I hadn't realised that ovarian cancer had so many sub-types, and mine was high grade serous ovarian cancer. This is the most common, at about 75% of ovarian cancers, but also the most aggressive. However, because it's the most common it is the one they know most about and so treatments have come a long way.
My first mission, with lots of help from my daughter, was to find someone prepared to operate on me. My daughter had researched some Facebook groups for ladies with ovarian cancer and the name of a Professor Christina Fotopoulou in London kept coming up over and over again. Research showed that she was in the top 3 of her profession in the world. I spoke to her the same afternoon and she agreed to operate after my third chemo, pending looking at scans. This operation was booked privately for October 2020. Chemo was relatively doable and I still managed to get out on my bike regularly. The operation really took its toll. It is called debulking and is known as "the mother of all surgeries". I had a full hysterectomy, removal of cervix, peritoneum, omentum, 11 lymph nodes and liver resection. The great news was that my scan after that showed no evidence of disease and I was in complete remission. I struggled throughout chemo with my bloodwork, my neutrophils were often so low that my chemo was delayed for a week of more. Before the last 3 chemo's I had to inject for days beforehand to give them a boost. My final chemo was 11 January 2021.
Anyway, fast forward to March 2022 and I am still being scanned and monitored quarterly. There is a very high chance of recurrence but there are so many different types of treatment now, I will deal with that as and when I need to. For now I feel really well and am living an active life. Although my CA125 tumour marker has risen a little, the last scan showed just one enlarged lymph node, so I am currently on what they call "watch and wait". I am on a maintenance drug (PARP) called Niraparib, and although not without its own nasty side effects, it is worth it to keep everything at bay. This is aimed at blocking the enzymes involved in DNA repair processes that cancer cells rely on as they multiply.
Looking back, I thought when I was first diagnosed that my bleeding had been the only symptom of ovarian cancer, but I had been needing to wee more often and had "self diagnosed" my low abdomen dragging feeling as a prolapse. I have since found out that these, along with bloating, feeling full quickly, changes in bowel habits and rapid weight loss can also be symptoms. They are often subtle body changes and regularly misdiagnosed as IBS by GP's so if something doesn't feel right get it checked out. Early diagnosis is key, although unfortunately most people are diagnosed at an advanced stage. The Facebook groups set up for ladies with ovarian cancer have been an invaluable source of information for me. There is always great advice and support on there for each other. Google can be scary at times so I try to stay away from that and always focus on the positives.