PTEN Increased My Risk – This is Why I Said Goodbye to My Breasts (and Hello to Peace of Mind)

I’m Ellie Challis. I’m 35, a mum to a beautiful 15-month-old boy and very happily married, and I live with PTEN Hamartoma Tumour Syndrome (PHTS). I wanted to share my story for anyone out there who might be considering a risk-reducing double mastectomy. It’s a big decision, and I hope my experience can offer some insight, reassurance, or even just a sense of solidarity.

I was diagnosed with PHTS in my early 20s after my dad was found to have an increased number of polyps during a routine colonoscopy. Genetic testing followed, and that’s when the PTEN mutation was discovered. Of all the risks associated with PHTS, the breast cancer risk was the one that stuck with me the most. From the moment I was diagnosed, I knew I’d eventually have my breasts removed it was never a question of if, just when.

In my 20s, my geneticist arranged for me to meet with consultants in London and Henley to discuss the procedure. They were helpful, but I wasn’t in a rush. I was managing well with annual MRIs, which gave me peace of mind. But things changed during our IVF journey. My body didn’t respond well to the surge of oestrogen from the ovary stimulation drugs. Within six months, I found a lump in my right breast, and my left nipple started bleeding.

Post-surgery selfie – this was only a couple of hours after!

When the first biopsy came back inconclusive, surgery was recommended. I went into overdrive getting everything sorted as I needed answers and a plan. I remember speaking to a nurse who mentioned that one of the consultants was staying late and could have a word with me. That conversation changed everything. It was the moment I met the most incredible surgeon, who took me and my somewhat unpredictable boobies under his wing. His unwavering support, empathy, expertise, and kindness became a lifeline. Having him by my side throughout this journey meant the world to me, and I genuinely believe that my outlook and experience would have been entirely different without him. I’ll always be grateful that our paths crossed when they did.

I was fortunate to have access to private medical care through my job, which allowed me to arrange both surgeries in a timely manner. While the procedures and recoveries went as smoothly as possible, the uncertainty around whether I had cancer gave me quite high anxiety. It took multiple tests before I was finally told there was no cancer and no further action was needed. Still, my surgeon always said my breasts were a ticking time bomb, and he strongly supported the idea of risk-reducing surgery.

As life with my baby unfolded and with the possibility of growing our family, I didn’t want to face the same breast issues if we chose to go through IVF again. So I began discussing the mastectomy with my surgeon. I had two options: implants or using fat from my belly. After many conversations, I chose implants for now, with the possibility of switching to my own fat later when recovery wouldn’t be as disruptive.

I initially planned the surgery for January 2025, but with my son starting nursery, it didn’t feel right. So I booked it for June, hello, sunny recovery! I wasn’t worried about the anaesthetic (not my first rodeo), and my mum friends even joked about how jealous they were of the deep sleep I’d get!

The surgery went well, although my surgeon noted a lot of scar tissue from previous procedures. I was discharged with two drains, picou dressings, pain relief, and antibiotics. Surprisingly, I only needed paracetamol and ibuprofen for the first two weeks. The hardest part? Not being able to pick up my son and dealing with the drains and dressings. But I kept reminding myself it wouldn’t be forever.

Did anyone say boob party?

I took six weeks off work and had to take it easy, which was tricky because I felt so normal. From the start, I wanted this journey to be a positive one. In my eyes, it is positive. It’s my way of saying “no thanks” to PTEN. I even threw a little “boob party” with my girlfriends during recovery (don’t tell my surgeon but dancing did take place).

I feel incredibly lucky. Despite the risks, I was able to keep my nipples, which wasn’t guaranteed due to previous surgeries. I also have weekly therapy, which has been a lifeline not just for navigating PHTS, but for life in general. Talking things through about this decision helped me stay focused on the end goal.

I love my life, my family and my friends. I want to be here for many years to come, making memories. I’ve seen too many incredible women have their lives devastated by breast cancer. I feel lucky to have had the choice to reduce my risk. If you’re considering this surgery, know that it’s okay to feel scared, uncertain, or overwhelmed. But also know that it can be empowering, life-affirming, and even joyful.

This was my middle finger to PTEN and I wouldn’t change a thing.

Thank you to Ellie for sharing her story. If you were affected by her story or would like to know more about PTEN and PTHS, you can visit the PEN UK & Ireland website.