BRCA1 update: Removing my fallopian tubes to prevent ovarian cancer

I will forever remember Thursday 5th May 2022, the local elections..and the day that I signed the consent form for removing my fallopian tubes to prevent ovarian cancer. The day I effectively signed my fallopian tubes away to reduce my inherited risk of developing ovarian cancer.

After almost a year of fact finding, a rollercoaster of emotions and weighing up the best next step forward in light of my BRCA1 gene mutation diagnosis, I have finally taken the first step towards my cancer risk reduction.

With a heavy heart

I still have no idea whether this is the right thing to do, but this is my body, my mind, and my physical and mental health. It’s a big leap of faith. I am not going for the belt and braces gold standard approach of having both removing my fallopian tubes and ovaries, which is the best way of reducing the risk of developing ovarian cancer. I just can’t get my head round parting with my ovaries yet. The thinking about the removal of the fallopian tubes first is that according to current research, in many women with ovarian cancer it is believed that the disease may originate in the fallopian tubes.

Perhaps I am being cowardly but the thought of having my ovaries removed and being sent into surgical menopause and the will it or won’t it work of HRT frightens the life out of me at age 41. With the average age of menopause 50 I am just not ready to go there yet. I know everyone kept on saying if it was them, they would have both the fallopians and ovaries removed, but I am not everyone, I am ME.

Feeling frightened

I am also frightened that once they do go in there and go about removing my fallopian tubes, and take samples of the tissue from around that region that they will find cancer cells in there anyway (this happens in about 20% of cases), and I will have to have both my ovaries out and start cancer treatment. Or that ovarian cancer could develop before the later date of having my ovaries out, closer to the time or natural menopause.

I could drive myself crazy with these thoughts but have to take baby steps and trust that at least I am now in the system and what will be will be come my operation which is likely to be in November.

Taking comfort

I keep telling myself, at least I can take comfort in the fact that I am in excellent hands. The world class team running the Protector Study that I will be part of – running out of St Bart’s. I will never forget the warm yet firm handshake of Ranjit Manchanda, a Professor at Wolfson Institute of Preventive Medicine, Barts CRUK Cancer Centre, QMUL, and Consultant Gynaecological Oncologist at Barts and the Royal London Hospital – and that smile which told me I was in kind and extremely capable hands.

Still, I couldn’t hold back the tears as I agreed to all the risks and caveats involved in surgeries, the woulds and would not and signed the consent form for the removal of my fallopian tubes and my ovaries at a later date.

The secret is out

I am beyond relieved that my daughter now knows the secret I had until last week been keeping so close to my heart, waiting for the right time to unfold the truth.

There were tears as I tried to tell her that the upcoming preventative surgeries were for the best and would only start with a little one. She sobbed as I told her about the preventative double mascetomy which I would probably eventually have and asked whether she would be able to still cuddle me? Would my breasts still feel soft and squidy? I cried for the future loss of my good old friends which had fed my daughter in her infancy which were now a ticking timebomb.

Ultimately I know that my risk reducing journey is a marathon not a sprint, and I need to stay strong for the long haul and pray that my body will not renegade or submit to the worst case scenarios along the way as I countdown to receiving my operation date. I pray that time will be on my side, and that a positive outcome awaits.

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About the PROTECTOR study

PROTECTOR is a research study for women who are at an increased risk of developing ovarian cancer. Some women may have an increased risk due to:

  • Carrying an alteration in ovarian cancer causing genes such as BRCA1, BRCA2, RAD51C, RAD51D or BRIP1.
  • Having a strong family history of ovarian and breast cancer or ovarian cancer alone.

PROTECTOR aims to assess the impact on women of a new two-step surgery to prevent ovarian cancer. This involves initially just having your fallopian tubes (or ‘tubes’) removed to prevent ovarian cancer. This is followed by removing your ovaries in a second operation at a later date of your choosing or once you have reached menopause naturally (which on average is 51 years in the UK).

The study assesses women’s views and the impact of this two-step surgery to prevent ovarian cancer on sexual function, hormone levels, quality of life and overall satisfaction. Outcomes from this new approach are compared to the traditional approach of removal of both tubes and ovaries in the same operation. We will also compare this to the well-being of women who do not have surgery. Women are able to choose which arm of the study they wish to take part in: single operation removing both tubes and ovaries, two-step surgery, ‘controls’ (no surgery).

Approximately 30 hospitals across England, Wales, Scotland and Northern Ireland are recruiting participants for PROTECTOR. We aim to recruit 1,000 participants in total (333 in each study arm). If you would like to take part, please ask your GP to refer you to your nearest recruitment centre which can be found using this interactive map. Alternatively, you can contact the team for further details on how to take part.

Photo by cottonbro

Living with BRCA1: From ticking time bomb to taking action

It’s been almost 6 months since I tested positive for the BRCA1 gene mutation. That means six excruciating months of living with BRCA1 feeling like a ticking time bomb and being at worryingly high risk of developing breast or ovarian cancer – may be both – over my lifetime, maybe over the next couple of years. Who knows? I don’t have enough women in my family to know how this could play out for me.

After spending a couple of months in denial, I went into a total research frenzy. I became obsessed with finding out the answer to everything about my new mind-bending prognosis to make sense of this crazy world of living with BRCA1. I had so many questions and thoughts on repeat in my brain it was utterly exhausting and overwhelming. Every spare minute I had I was lurking around in BRCA Facebook support groups and BRCA threads in cancer charity forums, feverishly devouring other women’s stories of their BRCA journey and their version of living with BRCA1 – the good, the bad and the ugly.

With every story, I anxiously weighed up my options, which I began to realise were not as many as I had hoped for a woman in her 40s in this day and age.

As I write this, I already have a 1 in 100 chance of developing breast cancer anytime now and that gives me the cold sweats just thinking about it. I know I need to trust myself, have courage, and blow this baby wide open.

Living with BRCA1

Living with BRCA1: No easy magic bullet

After countless conversations, I began to realise there is no magic bullet here other than to have preventative surgery. At my appointment with the Genetics team at The Royal Marsden to which I turned up still clutching at the hope that I wouldn’t have to have my ovaries and breasts removed dissolved quickly. The brutal reality of what I was dealing with smacked me right in the face.

Any noninvasive treatment using PARP inhibitor drugs in a preventative manner that might suppress the faulty gene expression instead of ops was at the very least five years away. At the moment they are only used for actual cancer treatment and are at the time of writing not even in the early trial phase for preventative treatment. Even if I got onto a trial, there is no guarantee that I would then be given a placebo. And of course then I would also have to sit and twiddle my thumbs for a number of years, by which time I could have already developed cancer. And that is not a chance I’m willing to take. Ultimately I began to realise my options were:

  1. Go through the excrutiating pain of taking a wait and see approach of being monitored for breast cancer through regular MRIs, mammograms and freaking out every time I thought I found a lump in one of my breasts. Note, there is no effective screening process for ovarian cancer. So that basically means just waiting to see if and when the cancer shows up and then having to deal with it and the potentially horrific treatment that fighting cancer involves. Thanks but no thanks.
  2. Taking place in The Protector Study to have just my fallopian tubes removed because it’s estimated that around 70% of ovarian cancers start there. I was seriously tempted by this but at already 41 years of age and most ovarian cancer risk presenting itself from age 45, I felt I didn’t really have the time to be messing around with this one. Ultimately I would need to have my ovaries removed in the end anyway and this felt like simply delaying the inevitable….
  3. Having my ovaries removed, my breasts removed and the reconconstructed. The full shebang. Jesus.
  4. Put my faith in alternative approach mainly through lifestyle, diet and herbs and supplements known to have cancer suppressing properties. Ultimately I was just not willing to put my eggs in that basket – as big an advocate I usually am of the natural approach – when essentially my life was on the line.
Living with BRCA1

Step up number three

I knew that whichever way I sliced it, the only option to help keep me cancer-free, alive and well would be number three.

So now I spend my free time looking at pictures of reconstructed boobs convincing myself that I will be ok with my future double mastectomy and reconstruction, that the scars will not be too bad and if they are, that I will try to turn them into something positive by having an artistic tattoo inked over them.

I am also shit scared of the hormonal mess that may ensue from having my ovaries removed – even with HRT which doesn’t mean it will all be rosy. I’ve been there before when I had a total thyroidectomy due to precancerous cells in my thyroid and it was not pretty let me tell you. So I’ve booked an appointment with hormone specialists at The Marion Gluck Clinic to start that conversation and get the best advice I can get.

I’ve also been really lucky to find a couple of amazing BRCA positive role models in my personal network who have been there done that and are helping me to deal with all the things I am so scared of. Questions like will I still be the same person? Will I still like myself? Will it affect my confidence? Wow about my libido and sex?

In the final analysis, it is a big thing having two things massively associated with your womanhood removed, and it is that at the moment that I’m finding the hardest to come to terms with. But then when you stack that up against cancer….well, how could I be so vain? But there it is.

Living with BRCA1: So what’s my game plan?

Right now, I’m waiting for my breast MRI results, hoping that there isn’t something lurking there already. And my rebooked mammogram- because I bloody well got pinged and had to go and take a PCR test which scuppered my previous appointment – is now ticked off. And so I wait.

Once I’ve had those results and know what I’m dealing with, I’ll be able to move forward. My plan is to immerse myself in the Christmas festivities and live life to the max with as much joy as I can possibly cram into it, then come January it’s time for shit to get real. I need to push the button and say I want to move forward with the procedures and stop cowering behind the sofa, starting with the oophorectomy (that’s ovaries removed to you and me love). I know I can do this, I’ve got to be fierce, a previvor, and do it for all those women who never got a chance to do so. I’m doing it for me, my daughter, my family, and for every woman who never made it this far.

Woman photo , People photo created by wayhomestudio, Ribbon photo created by rawpixel.com – www.freepik.com