My story

by Mrs Atko

[This is the first in a new series of guest blogs where other women who are experiencing a BOT diagnosis and/or surgical menopause share their stories.  If you would like to contribute, please contact me.]

I was diagnosed in April 2016 (aged 33) with a suspected large ovarian ‘cyst’ after ongoing abdominal pains, bloating, needing to pee more regularly and clear abdominal distention. I saw my GP who said she’d refer me for a scan, but this could take 6 weeks. So as something was clearly not right, I decided to go for a private ultrasound scan.
This was done within a few days and clearly confirmed the presence of something
rather large and fluid filled, sitting directly above my uterus. My left ovary
looked normal.

Still going down the private route, I was referred to a Gynae Obs and was informed that it was likely just a large (15cm) fluid filled, simple ovarian cyst, but due to its size, it would need to be surgically removed via a laparoscopic procedure (keyhole). As my tumour marker CA-125 was normal (7.9) the wait list on the NHS would have been 6 months. As I already looked about 4 months pregnant with the abdominal distention and, due to its size, I was at risk of either rupture or torsion (either of which would
have landed me in A&E at any point), I decided to have this procedure done
privately. This was booked in a week later (we’re now in June 2016). The
operation was a success and my Gynae Obs managed to ‘bag’ the cyst and remove
it safely whilst preserving the affected ovary (this bagging technique subsequently
turned out to be a life saver in relation to my ‘staging’, which I’ll come onto
later). A week later, the pathology came back and I was called by my Gynae Obs to
be told the ‘cyst’ was in fact, a borderline mucinous tumour (or BOT).  A tumour of “Low Malignant Potential” (LMP). “Not quite cancer, but not quite benign either”.
I would be receiving a phone call from a Gynae Oncologist that day to take things further as another operation was likely.

This was all a little shocking. I remember writing the words “not quite cancer but not benign either” down on a piece of paper as I spoke with my Gynae Obs and my husband was reading over my shoulder, the colour slowly draining from his face as much as mine. By the time the conversation was over, I calmly put the phone down and promptly burst into tears. Having lost my darling Mum to primary liver cancer only a few years ago, I was suddenly frozen in fear. I was one of those unlucky ones. What did this
mean? Was I going to be ok? What other surgery was I going to need? Would I
need chemo? How would this affect my life? What was the prognosis? My questions
came quick and fast and after the initial shock (I was physically shaking after
the phone call) I put the phone down and slowly but surely, started to draw up
a list of initial questions. We referred to my BOT as ‘Ripley’ like the
character from Aliens (because that what it felt like…an alien in my belly). It
helped lighten the mood when we talked about it. I kept friends and family
up-to-date with emails entitled ‘Ripley and his mutant allies’!

I was referred to my new Gynae Onc almost immediately and she explained that I required a second operation to have the affected ovary, fallopian tube and my appendix all removed along with biopsies being taken from my omentum and perinoeum and abdominal washing being completed for staging purposes. The reason my appendix would be removed was due to the nature of mucinous BOTs specifically (as opposed to serous, the other most common type of BOT), they can often originate from the appendix and so they remove that too as a matter of precaution, which is sent to pathology in case further treatment is required. This operation was carried out in August 2016, again
laprascopically (keyhole) although the horizontal bikini incision was 12cm long
as my affected ovary had developed a large hematoma inside it after the first
operation and they wanted to remove it intact.

Above: My Mucinous BOT

 

At my post-op, my Gynae Oncologist informed me the operation had been successful and all biopsies and abdominal washings along with my appendix results had come back clear. I was staged 1a. She told me that had my first Gynae not ‘bagged’ the BOT before removing it and it had ruptured in situ, it was likely I would have been staged 1c. I was relieved he had had such news! Due to the success of both operations, I was told I
needed no further treatment. Those words felt like liquid gold! I had never
before realised that I’d taken my health for granted. No more!

My 6-month follow up was planned for March 2017 but at the end of Nov 2016, I had been experiencing persistent abdominal pains so I went back to my Onc, had another ultrasound scan and a small (2cm) complex ‘septated’ cyst was showing on remaining (left) ovary. I am currently on a ‘wait and watch’ approach until the end of Feb 2017 when I’ll have another ultrasound scan before my appointment with my Onc on 2nd March. I am now 34. My Onc took a ‘fertility saving’ approach as I currently have no
kids. Had I been older or finished with my family planning, the standard
treatment would have been a full abdominal hysterectomy. She did not feel this
was currently necessary based on the outcome of my two operations (and
subsequent staging), but it ‘may’ be something I need to consider in the future.

For now, I am just relieved it was ‘treatable’ with surgery alone, but that doesn’t stop the constant worry of reoccurrence. I feel I have now become an expert in the field of BOTs and agree that more work, awareness and research needs to be done, in order for us to
understand this particular form of ovarian cancer better. My friends and family
have been massively supportive, but in all honesty, I don’t think they really
understand what it was/is all about. I was fortunate not to have to have chemo or
radiation therapy BUT I did have to have major operations in my early 30s,
which has been incredibly frightening.

Being a part of both a forum and a Facebook page that is specific to this form of ovarian cancer has really helped make me realise that I’m not alone and this is more common that we might think.

But most importantly, caught early, it can save lives!

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