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

10 thoughts on “BRCA1 update: Removing my fallopian tubes to prevent ovarian cancer

  • I wasn’t familiar with this surgery to help prevent against cancer. I am much more familiar with masectomies due to the cancer gene. I’m sorry you had to go through this, but at least you can have more peace of mind.

  • So very sorry you had to go through this.. Thank you for your strength to share your story with us.

  • I totally get how you are feeling, not personally but at my last mammogram when they noticed something I was going through all sorts of things in my head. Your fallopian tubes and ovaries are part of what makes you – you. they are an important part of you. It is such a huge decision to make and yes it is easy to say if it was me they would be gone. But in reality we would all feel the same as you. Thank you for sharing and bringing awareness

  • I can’t even begin to imagine how you must be feeling and the decisions that you need to make. You’ve got to do what feels right for you and see how it goes. Hopefully by removing the fallopian tubes that will be enough to give you the clear x

  • You have taken a big step and I would also feel anxious about that too. I am the same age as you and like you feel that I wouldn’t be ready – but reducing the risk is so good for your mental wellbeing too

  • I wish you a smooth surgery and quick recovery. I do hope this ends up being the right decision for you.

  • I hope you are feeling better now. I hope the surgery went smoothly for you. Take care my dear.

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