The Size of a Melon

I started this blog to share my experience of being diagnosed with Ovarian Cancer and the journey of treatment. My hope is that reading about my experience may help and educate others.

A Shocking Discovery: Post-Menopausal Bleeding

Finding blood in my underwear was a shock.  I went through the menopause five years ago.  Everyone knows post menopausal or breakthrough bleeding (if you are still having periods) is not a good sign.  It is bad.  It is very bad.  My immediate thought was cancer.  My second thought was ovarian cancer.  My third thought was that this is one of the worst cancers to have.  It is known as the silent killer because you have no symptoms until it is end game.  Strangely, my next thought was that I have had a good life.  Not a perfect one, nor an untroubled one, free from pain or grief; but certainly a good one.  If this was it I could be happy with the life I had lived and I would make the most of the time that I have.

I called 111 (it was a Saturday) and sought advice.  They advised me to get an urgent appointment with my GP on Monday morning.  I couldn’t see my GP until Tuesday morning but got an urgent cancer pathway referral for investigations and could hope to be seen in two weeks.  That afternoon I visited my physiotherapists and when I lay face down on the bench I could feel a lump in my pelvic area.  It was not small and it was uncomfortable to lie upon.  I knew for sure that this was definitely in the region of my ovaries, uterus (womb) or fallopian tubes.  The faint but persistent hope that this was not what I initially thought it was, rapidly disappeared.

The Reality of Gynaecological Cancers

There are five gynaecological cancers – womb, ovarian, cervical, vulval and vaginal. Each year in the UK, around 22,050 women and people with gynae organs are diagnosed with one of these cancers.  I certainly hadn’t had any of the more obvious symptoms – unexplained weight loss, changes in my bowel habits, bloating, lower back pain, persistent itching or urinary incontinence.  However, now I really thought about it, I had been noticing a bit of urgency when I needed to go urinate.  I had the feeling that I couldn’t really hang on and if I did I might get some leakage.  I’d put it down to being post-menopausal.  These days our TVs are full of adverts for products for female urinary incontinence, featuring middle aged women in yoga studios waxing lyrical about all the things their new “pee pants” enabled them to do.  It is great that this sensitive topic (taboo in previous decades) has been normalised; but now it made me think that perhaps it had been made too normal.  Maybe there are women out there dismissing the urge to pee or a little bit of leakage as normal now they are middle aged and post-menopausal, when it is actually a symptom of something more sinister.  Maybe that had been me.

The Tests Begin

What had been an almost indiscernible swelling on the left of my pelvic area had become definitive.  In fact it was growing daily.  Growing larger and so quickly it was really scary.  By Thursday evening it was so prominent that I decided a two week wait to see someone was unacceptable.  In fact, it was dangerous.  This was growing so fast I didn’t know where was left for it to go.  I attended Accident and Emergency at my local hospital.  Despite the usual long waits to be seen I was triaged immediately I described my condition.  From then my feet didn’t touch the hospital floor.  I went straight from triage to assessment.  Fairly swiftly they announced they were admitting me to the gynaecology ward for more tests.  Worryingly they insisted an ambulance drive me a cross the hospital to the ward with a nurse in attendance.  At least I knew I hadn’t been making a fuss over nothing or been wasting people’s time.

I was admitted to the ward (it was the early hours of the morning) and seen by the on call registrar who did an internal and external ultrasound examination.  He attempted a cervical smear but it was excruciatingly painful (courtesy of my post menopausal vaginal atrophy that has made the last few smears very difficult) and the nurse called a halt saying we could not continue.  He was able to confirm that there was an ovarian cyst causing the issue and it was quite large.  He wanted the procedure repeated in the morning by a specialist ultrasonogapher.  Deep joy.

They took blood for a CA-125 test.  This blood test checks for raised levels of a protein that may be higher if you have ovarian cancer.  Generally speaking, the normal range of CA-125 is considered to be 0-35 units/mL, while a level above 35 units/mL is considered to be a high CA-125 level. Although a CA-125 blood test can be a useful tool for the diagnosis of ovarian cancer, it is not uncommon for a CA-125 count to be elevated in premenopausal women due to benign conditions unrelated to ovarian cancer, such as diverticulitis, endometriosis, liver cirrhosis, pregnancy, and uterine fibroids.  Sometimes in early ovarian cancer, CA125 levels may be normal.  As a result, the CA-125 is generally only one of several tools used to diagnose ovarian cancer in a patient with a pelvic mass or other suspicious clinical findings.  Mine came back as a nice healthy 14, which was a relief.

The next morning the ultrasonographer performed a transvaginal ultrasound.  She explained to me the ORAD-S (Ovarian-Adnexal Reporting and Data System) scoring system to identify potential malignancy of ovarian cysts.  Cysts are scored from 1 (normal), through 2 (almost certainly benign), 3 (low risk of malignancy), 4 (up to 50% chance of malignancy) to 5 (a greater than 50% chance of malignancy).  Clearly I was hoping for the lower end of the scale!

The Diagnosis

I didn’t get the results of the ultrasound until I saw a consultant later that day.  Then I found out that the cyst on my left ovary measured 15.5cm across.  It was so large it was crushing the bladder and displacing the sigmoid colon (the last part of the large intestine that leads to the rectum).  The cyst also had papillary projections with the largest being 35 x 34 x 30cm and highly vascular; in other words, large and filled with blood vessels. Fortunately the right ovary appeared normal and the thickness of my endometrium (the lining of the uterus or womb) was normal (thicker than 4mm being bad). Some bad news, tempered by some good news.

After the ultrasound I was returned to the ward to wait.  An hour later a nurse came to get me and moved me to a private room to await the consultant.  I knew then that the news was not going to be good.  The consultant was delayed by an emergency coming into the emergency department so I had plenty of time to search the internet for questions to ask when you get a cancer diagnosis.  Eventually he arrived with three of his team in tow and I knew for certain it definitely wasn’t going to be good news.  He sat down and brought out his best bedside manner, talking to me slowly and gently.  I already knew before he said it.  The piece of toast the nurses had brought me (it was now breakfast time on the ward) grew cold and was left untouched.

Whilst my CA-125 test was normal, this could not be considered reliable.  The ultrasound results were much more conclusive.  The cyst on my left ovary was large, a mix of solid and liquid matter with projections growing from it.  The ORAD-S score was 5.  There was a very high chance (greater than 50%) that it was malignant.  I was going to need a CT scan and then my case would be reviewed by the multi-disciplinary team.  I’d very likely need surgery to remove it and soonest would be best.  They offered me kindness and support along with the details of the Specialist Nursing Team, available to support cancer patients.  I was discharged to await my CT scan and went home to tell my husband the news.

Wrapping Up

Discovering post-menopausal bleeding can be alarming, and it's crucial to seek medical attention promptly. My journey has been a reminder of the importance of being vigilant about our health and not dismissing symptoms as just another part of aging. I realise I was blessed to have that bleeding and be able to act quickly.

If you’ve experienced something similar or have any questions, please leave a comment below. I’d love to hear your thoughts and experiences.

For more updates and health tips, don’t forget to subscribe to our newsletter. Share this post with your friends and family to spread awareness about the importance of early detection in gynaecological health.

Stay healthy and take care!

---