As part of Breast Cancer Awareness Month, Gef is profiling the models for the Fashion for Life fashion show, in aid of Isle of Man Breast Care and Breast Cancer Now Volunteering in the IOM. The show, which takes place on Friday 22nd October, will feature 80s-inspired fashion, modeled by local survivors of breast cancer. You can book tickets at: villagaiety.com/whats-on/fashion-for-life/
What is your name:
Tell us about you and your life pre-diagnosis
I had returned back to the Isle of Man with my family (my husband and three boys) in July 2013, after living in Singapore and Shanghai for 15 years. It was an extremely difficult time, as on top of relocating, getting ourselves settled, finding somewhere to live and getting the boys settled and into schools etc. I lost my beloved Dad very suddenly. The grief was hard to get over and moving forward was difficult. But, life goes on and I made some great friends, found a job, joined exercise classes and focused on my family.
I was and always had been, fit and healthy. I exercised a lot, loved going to group classes, and had been a healthy, vegetarian/pescatarian since I was 19. I had never smoked, and only drank socially.
When were you diagnosed, and how old were you?
I was diagnosed with Paget’s Disease of the Breast on the 30th October 2018, aged 46.
How were you diagnosed?
My first concern was weeping from my left nipple, which I noticed in summer 2018. I initially thought I was over-exercising and had jogger’s nipple (whatever that is?!) and was chafing. I tried vaseline and sudocrem- which I don’t recommend as I trashed a lot of bras and it was very hard to get the white stains out!
I felt awkward and embarrassed. I mentioned it to a few close friends, who made some suggestions, including speaking with the doctor. Instead, I battled on until I finally mentioned it to the nurse at the GP when I went for a prescription review. She gave me a cream to apply daily and told me to let her know how I got on.
It was when I went on a holiday to Sagres, Portugal, in late summer, when I first felt something was wrong. I was so tired, and freezing cold all the time. When October began, I started to experience pain through my nipple and into my breast. It felt like acid and hot candle wax had been mixed together and were being poured into my breast and through my nipple. I immediately got an appointment with my GP, Dr Flannigan on the Island. She referred me to an emergency appointment at the Nobles Breast Clinic.
The mammogram and scans did not show anything of concern, but after telling the doctor all of the above and the way I looked, the doctor took a deep biopsy of the nipple (definitely one of the worst experiences). A week later Dr Aida told me I had Paget’s breast cancer, a rare form of cancer. My journey of treatment began.
Tell me about your treatment
I was advised that I should visit specialists off-Island after I had multiple biopsies taken. Paget’s was confirmed on Island and I had had a specialized CT scan with colour dye to show up affected areas.
I saw Anne Tansley at the Spire in Liverpool and Mr Gui in London at both the Marsden and the London Clinic. They both agreed that I needed a full left breast mastectomy. Because my build is slim and I don’t have a lot of excess skin or fat, the surgeons decided I should have a removal and reconstruction at the same time. The next steps would be determined after pathology. I chose to go with Mr Gui in London as my surgeon.
Very few women who get breast cancer will be diagnosed with Pagent’s, and a small minority will be lucky enough to find it before it spreads. I was in the lucky minority: I had found the cancer while it was still contained in the nipple and milk ducts.
Best advice I was given
The best advice I got was to act quickly and to make sure to let the doctors take away all the breast and nipple and not to try to save anything, because all it takes is a single cell for that cancer to once again grow and spread.
Advice I’d give
I would advise women to check their breasts regularly/once a month and to be familiar with their normal shape, size, lumps, bumps and feeling. If anything changes, no matter how small or silly it seems, ask your doctor about it. Finding cancer early is so important when you take the risks of ignoring something serious, the progression of time & possible spread, aftercare and treatment into consideration, as is making sure that your surgeon gets good clear margins rather than trying to save breast tissue that may mean you need a further lumpectomy or treatment.
It was hard to agree to completely sacrificing my breast, as it’s beautiful, sexual, and a symbol of feminine beauty and I was devastated thinking my husband wouldn’t want me or find me attractive any more… which fortunately did not happen!
You need a strong support network when you go through something like this, as well as a clean ‘plan’. I was blessed with an amazing family and incredible friends.
Take any help that is offered. My mum came with me to London and her support, company and strength was much needed.
After an operation and a drain, which is very unpleasant, it’s important to move and gently exercise and follow the physio’s exercises to prevent any swelling and lymphedema, as lymph nodes are removed to check that the cancer cells have not spread. Specialized massages from the breast care physio Edith here on-island helped the pain and tightness I had through cording after the tubes and drains post-op.
Have pretty, feminine pyjamas that you can unbutton down the center as they are so much nicer than the scratchy gowns. It’s good and important to feel like you, not a patient.
You do need to be kind to yourself, rest when you can. My friends set up a rota for visiting me both in London and at home. They brought treats, meals for the family and shopped, which took the pressure off me as my husband was away with work.
Tell us about your life now and the impact it has had on you
I am strong, fit, healthy and still kicking ass thanks to surgery and catching my cancer early. There is not a day goes by where I don’t recognise that I am extremely blessed and lucky that I caught the cancer early and that the doctors got it all contained in my left breast. It is a heartbreaking disease that has taken so many people, like my beautiful friend Nikki B, who was one of the strongest and most incredible girls. So, if you have any concerns at all, don’t ignore them or think you are going to be wasting people’s time, get checked!
How were you supported by Breast Cancer Now and other Manx BC charities?
The island is blessed with amazing women who have not only been through breast cancer, but are supporting others going through cancer and raising money for cancer, and to be involved in that and to meet fierce, strong, beautiful, sexy breast cancer survivors is very empowering. The teams leading the breast cancer charities on the Island are truly phenomenal women, and what they are doing and the equipment they have paid for and the support they give is everything.
Thank you to Cath Robertshaw for sharing her story.
As part of Breast Cancer Awareness month, we are selling Mystic Chest t-shirts and jumpers at: https://www.gefthemongoose.net/shop/collections/mystic-chest
Learn more about the collection and the story behind it here.