I would come home and share with my then fiancé (a hospital doctor, also on the frontline) the challenges of each day. Throughout this time, the thought of our wedding kept us going; we finally tied the knot in July 2021. Me being 31, him 37, we felt we were at a good point in our lives to start our own family and so I stopped my combined oral contraceptive pill, which I had been taking for around 16 years. We dreamed of being parents and hoped that it would happen for us soon.
Three months after stopping the pill, I was still waiting for my first period. Of course, I was taking pregnancy test after test, convinced I must be pregnant! All negative. I tried to remind myself that this was probably “post-pill amenorrhoea” and that my periods would start again soon.
I had never had any health problems previously, and I felt otherwise well, so I had no reason to suspect that anything sinister might be going on.
However, when I was seeing my GP, a colleague who I very much look up to and trust, to talk about the work-related stress I was experiencing, I mentioned the amenorrhoea off-hand. We had also spoken about how my bowel habit had changed subtly too, which we thought might be in keeping with stress-related IBS-type symptoms.
Gut instinct
We discussed doing some blood tests for inflammatory markers, FSH, LH, oestradiol and androgen screen. I was unsure about proceeding so early with these tests, but my GP thought it was best for reassurance, and I trusted her judgement. My inflammatory markers were normal, but my oestradiol was raised at almost 2000, whilst the LH and FSH were undetectable. We repeated the tests, and they showed the oestradiol had risen a little further, and did a Ca-125 level, which was normal.
Guidance was sought from gynaecology, and their recommendation was to repeat the blood tests after a few more months had elapsed since stopping the combined pill. My GP instead elected to send me for a pelvic ultrasound scan; when I attended the scan appointment a few weeks later, I wasn’t expecting anything significant to be found. I recall seeing the face of the sonographer drop the moment she started the transvaginal scan; I knew immediately that something wasn’t right, but of course, she couldn’t tell me any information.
The morning after the scan, I was mid-clinic at a surgery over an hour away from home when I received an unexpected call from my GP, asking me to come in and see her face to face. She later explained that I had a 16-centimetre, malignant looking mass occupying most of my pelvis, that appeared to originate from my right ovary. I was stunned and panic stricken, but kept trying to remind myself that we needed more information.
I was referred to gynae-oncology and over the next few days I was running on auto-pilot, attending a myriad of appointments: CT scans, MRI pelvis, more blood tests, clinics, telephone calls. The pelvic radiologist reporting my MRI pelvis felt that the mass was almost certainly malignant; it had features in keeping with a granulosa cell tumour (GCT) originating from my right ovary, a rare type of ovarian cancer. As the mass was so large, it was difficult to visualise the involvement of the left ovary or the extent of any local spread, although thankfully there did not appear to be any distant metastatic disease.
I had never even heard of GCTs, and immediately went into research-mode to try to understand more. I recall that these couple of weeks were the hardest of all; not knowing what was going on or what the plan was, all the while aware that my pelvis was full of cancer that was growing day by day; every twinge made me question what was happening inside. It was so hard to imagine that something so large was inside of me, as I had not gained weight or experienced any bloating, but I was explained it may have been growing slowly over the past couple of years.
Having hard conversations
Next came the difficult discussion with my gynae-oncologist, who gave me the options between full pelvic clearance, or a staged approach, starting with “fertility sparing surgery” and then returning at a later date for completion surgery. I had always pictured myself as a mother, and never imagined that I would find myself having to make this kind of decision.
I remember looking at my husband with tears in his eyes as I told my gynae-oncologist that I would accept the potential risk of death in order to choose the “fertility sparing” approach. I also begged him, and then even went to a private fertility doctor about the possibility of pre-operative egg retrieval from my left ovary. Unfortunately, as the tumour was so big, my left ovary status was unclear and I needed the surgery urgently, this was too risky to attempt.
I was devastated by the thought of potentially not being able to have biological children.
This all happened a couple of weeks before Christmas, and at the height of the next surge in Covid-19 cases, and the emergence of the Omicron variant in South Africa. At the time of my diagnosis, my parents were at the start of a 2-month long trip in none other than South Africa; I had to tell them over a video call that I had been diagnosed with cancer and I was due to undergo a major surgery. They flew home but couldn’t see me beforehand due to us all needing to self-isolate.
I had my surgery – a midline laparotomy with unilateral salpingo-oophorectomy and tumour removal and cancer staging surgery – pelvic washings, lymph node stripping, omentectomy and biopsies. I understood how isolating it was being an inpatient during the pandemic: I recall that women giving birth in the same hospital could have their partners with them on the ward, but my husband couldn’t visit me on the gynaecology ward after major cancer surgery. I wished desperately that I was in their shoes instead.
Next steps
A few weeks after the surgery, I received news that this had indeed been a granulosa cell tumour of my right ovary and that it appeared to have not yet spread (stage 1A). My left ovary was unaffected, although it had been very compressed against my pelvic wall. I was extremely fortunate to have been diagnosed prior to the tumour rupturing or spreading locally; a large proportion of GCTs are diagnosed at stage 1C (the tumour rupturing during surgery, or through performing an ovarian cystectomy without the suspicion of malignant disease).
I was told that I wouldn’t need any further treatment right away, only close monitoring. I felt numb about the whole thing. I recall when I told others about my diagnosis, they told me to “be happy”, “just relax”, they “knew in their gut that I would be fine”, some even suggested that it wasn’t “real cancer”, as I hadn’t lost my hair through chemotherapy. All these comments just frustrated and upset me even more and caused me to shut down for some time.
I am now under lifelong monitoring, as GCT carries a particular risk of late recurrence. Unfortunately, as the suspicion of GCT was not explored further pre-operatively, the specific tumour markers for GCT (AMH and inhibin A and B) were not carried out at baseline. Oncology now repeats these tumour markers every three months or so, alongside regular pelvic ultrasounds and MRI pelvis for monitoring.
The radiological monitoring may be tapered with time provided there appears to be no disease recurrence. I now understand the feeling of “scanxiety”; the build up to the next scan, blood test or appointment, panicking if everything will be ok, and what if it isn’t? The sleepless nights imagining every possible outcome and how I might deal with each one.
Whilst I was recovering from the laparotomy, my thoughts turned to revisiting fertility preservation, in case of future recurrence. I underwent a round of IVF in February this year as an attempt to freeze embryos to give me some security regarding my chance of having a biological child in the future. Unfortunately, we had poor results, likely as my remaining ovary was still very “dormant”.
I really struggled to come to terms with this, it somehow seemed even harder to process than being told I had cancer. I felt that every way I turned, my dream of having a biological child seemed further and further away. I felt so isolated and didn’t feel like I truly fit into either the ovarian cancer or the infertility communities. I found a GCT support group online and went to a GCT European conference recently; I was the youngest woman there, and the only person who hadn’t already had children. Although it was wonderful to talk to others affected by the same rare condition, my journey is very different due to still having one ovary and carrying this risk.
Taking time to reflect
Over the past year, I have really felt that I can now empathise with patients facing uncertainty, stress, pain, hopelessness and desperation.
It has been truly insightful since entering back into the consultation room to resume part-time GP work.
With this in mind, I have tried to focus on the positives since my diagnosis and the way in which I can use my unique experience as both a doctor, and a cancer patient, to help others. I have been fundraising for Target Ovarian Cancer, a charity with brilliant resources to support both patients and healthcare professionals, that works to increase awareness and campaign for better treatments, support and earlier diagnosis of ovarian cancer. Through various events, including hiking to Machu Picchu, doing the National 3 Peak Challenge, and organising a Zumbathon, dance workshops, bake sales and talks at local businesses, I have raised just under ten thousand pounds for the charity.
I am also now supporting them in a GP advisory and education role, as I feel this really helps me to make sense of everything I’ve been through. In addition to this, I am now a volunteer network leader for Shine Cancer Support, a wonderful charity supporting people in their 20s, 30s and 40s with all types of cancer, and I have set up a support branch of the charity in my city.
I hope that by sharing my story, it may help others to suspect the diagnosis, even in young, apparently healthy women like myself, who have no family history of breast or ovarian cancer. The NICE guidelines suggest if there is no palpable abdominal or pelvic mass, to perform a serum Ca-125, and only if this is raised, to arrange an urgent abdominal and pelvic ultrasound scan. If my GP had followed the existing guidelines and not listened to her gut, I would have likely been in a much less fortunate position than I am now. I will be forever grateful to her for thinking outside of the box, and I hope this story inspires others to think similarly for their own patients in the future.
Charlotte is a GP based in the North West of England. She is passionate about raising awareness and fundraising to improve outcomes for women affected by ovarian cancer.
