My name is Tenille and this is my story.
The threat of breast cancer hangs heavy on my shoulders. Each female on my maternal side of the family has received the diagnosis. Two were just 45, three had it re-occur in the second breast and all underwent double mastectomies. During this time the ‘threat’ was never considered a major issue for me as I was young and far enough ‘removed’ from each relative. However, in my thirties I insisted that I commence preventative screening (ultrasound) to ensure I had baseline knowledge.
Then in June 2015 my mother received her diagnosis after feeling a lump. It was a shock, more so because despite many years of annual high-risk screening, no sign of the 9mm Grade 3 lump was detected just six months prior. The surgeon advised that the (ER- PR- HER2+) lump was fully contained so a lumpectomy followed by chemo, radio and Herceptin was recommended.
The threat now felt real. With mum included in our family history and my 40th birthday looming I got anxious. Together we started the genetic counselling journey to see if we had ‘the gene’ or had just suffered from ‘bad luck’. In late 2015, the family history was collected and entered into the database for an algorithm to be applied to ascertain our BRCA risk factor. The result was that mum only had an 8% chance of carrying the gene, which we were advised was under the 10% threshold for automatic testing. This put the decision about whether or not to proceed privately in our hands, which frankly raised too many issues, concerns, fears and all the other things that comes with both wanting to know and fearing the outcome. It was like crystal ball gazing.
Both mum and I sought independent advice from experts. Everyone agreed that the 8% chance was very low and likely to be accurate. Therefore, proceeding with the genetic testing would probably not shed any more light. It was at this point that we realised that Family History Risk is just as important as having ‘the gene’ and something we had to take seriously. In the meantime, there was a strong belief that there must be an unknown genetic factor at play.
I reflected on my life. I was now 40 and only 5 years away from when two relatives received their first diagnosis. With two beautiful boys successfully breastfed my child rearing days were in the past. I knew what I had to do but thought I might be over reacting so I got a referral to a Breast Specialist (BS) in February 2016 to seek another expert opinion.
My BS was great. She listened, took notes, asked questions and agreed with the other ‘expert advice’ we had received. I did not have the opportunity to ask my big question before she said ‘I put you at a 50% chance of getting breast cancer and would fully support you if you opted to have preventative surgery’ to which I breathed a big sigh of relief. I was not interested in taking Tamoxifen and was not confident in screening. Two weeks later I was visiting a Plastic Surgeon (PS) to find out about reconstruction options. This then led to many discussions with family and other recovering patients to learn more about the surgery, products and recovery – plus lots of research.
With full support from my husband and never one to do things half hearted and dwell for too long, I looked in the diary to work out a plan of action with the goal of getting everything ‘done and dusted’ by the end of 2016. Moreover, I wanted to make it possible to travel on a pre-booked trip to Europe in the middle of the year. Surely it could be possible?!
Very possible it turned out. On April 26th 2016, I had my first surgery, a prophylactic bilateral nipple-sparing mastectomy with saline expanders fitted. I will not deny that the experience was painful and confronting. I was in hospital for 7 days and then discharged into home nurse care for another 6 days. I was stuck with drainage tubes the whole time and carried a little bag of bottles full of my blood and plasma 24/7. I had opted for saline expanders because I didn’t want to risk having air-filled bags expanding while at low air pressure on a 24 hour flight to the UK.
After eight weeks recovery and full expansion, as the PS advised, and despite my initial post-op feelings, I was in great health to travel. The trip was like a celebration of life.
In September 2016, I was glad to return to hospital after the four-month minimum expander period, and swap the rock hard misshaped balls of saline for silicone implants. This surgery was very easy producing an excellent result.
Having such strong support from my husband, especially during the times of sadness and pain made the experience much easier. My boys have seen their mum at her most vulnerable while also watching their grandmother win the battle I am attempting to avoid.
I love the empowerment I feel as a result of making this decision and undergoing the surgery. I am under no false expectations that this removes all threat of still receiving a positive diagnosis, but my risk is now much lower than the national average of 12%. I can feel confident that I am better off than the ‘average woman’, which is in stark contrast to where I sat the morning of April 26th 2016.
I have been called brave but in my mind I have simply done what I had to do. For me the choice was easy.