I’m sharing my story because l wish I’d had somewhere to read how other women handled the confronting news of being told they’re a carrier of the BRCA 1 gene.
I only found out I’m a carrier because my younger sister Ellie was diagnosed with triple negative breast cancer and tested positive to the gene. Three months into Ellie’s chemo treatment I went from being her total support, to being thrown into the firing line.
After watching our mother die of cancer 15 years earlier and spending time in the chemo ward with Ellie, I was determined to use this knowledge to prevent any possibility of ending up in that horrific place. At age 42 when I found out, suddenly my ovaries felt like ticking time bombs.
I’ve always been a healthy, fit, energetic mother and wife; I wanted to stay that way. I wanted to watch my kids grow old, empowering them to take action and responsibility with knowledge in every possible way. So with my new knowledge, two weeks later I had a hysterectomy.
The surgery went well, apart from going home with two major infections throughout my pelvis and bowel. It was a long 10-week recovery before l was back up and racing. Finding an integrative GP who is open-minded to prescribing compounded hormones was a game changer for me going into surgical menopause.
I take HRT and wear an estrodot patch. I use a progesterone cream nightly, which most doctors don’t prescribe because of having no uterus, but if you read about natural medicine you’ll know how important it is to counter balance oestrogen. As a result I have consistent energy everyday, no menopausal symptoms, great skin, muscle tone, internal health and enjoy deep restful sleep.
Ellie and l decided to have a double mastectomy and reconstruction together; we did everything else together so why not this? We wanted to make it easier on the family too having to go through the experience only once. Thankfully Ellie breezed through without any problems.
If only my experience was straightforward and simple. Everything that could go wrong, did. I’m a thin build, I’ve never had much body fat on my upper body so I had what’s called “a very thin skin sparing mastectomy” this was to my disadvantage. I woke up from the surgery in tissue expanders because l was too tiny to go direct to implant.
On waking from the brutal surgery I had two comforts: one, knowing I lowered a cancer diagnosis to two percent because I kept my nipples, and two sharing a hospital room with my sister knowing she felt the same way.
After leaving the hospital Ellie and l shared a hotel room for one week. Our shared sense of humour is part of our close bond, we thought it would be fun taking painkillers at the same time, passing out at the same time and being totally on the same schedule, this plan kept us entertained and positive in the surreal madness.
Six days post op. my incision lines on both breasts began to break down and leak fluid. The right side settled down after being literally glue gunned back together, but the left side continuously broke down.
Almost every night l made a trip to the emergency room to have dressings changed, until eventually the tissue expander cut me from the inside out and l was back in hospital having the cavity repaired.
I woke up with a deflated expander, the medical staff slowly inserted fluid over time and pumped it back up. This was extremely confronting, the reality of the surgery was sinking in.
The left incision line settled and eventually the expanders were switched to implants. But the right incision line never had enough blood supply to it, making it impossible to ever heal completely.
I got staph from the constant open wound it was repaired twice and didn’t heal. I sat in a hyperbaric chamber for four and a half hours, 4 times a week to heal the cavity, but later found out nothing can heal perfectly when a prosthetic is present.
The implant was removed when the incision line broke down again. By now I’d had eight surgeries. The plan was to allow the cavity to heal, for me to rest and get strong to get through the ninth surgery to put the implant back in within a 6-12 week timeframe.
I was sent home with my 38th round of antibiotics, tired, emotional and weak from not using my body for 18 months. My warrior female pillars of strength and my husband’s unconditional love, patience and support kept me from really hitting rock bottom.
Two weeks post op. the incision line had healed. I could barely see the fresh incision line. My body felt happy, relieved, and l began to feel for the first time in 18 months, free of pain and fear. All of a sudden, I had the feeling that staying like this (lop sided) was an option. Not once had I been offered a conversation about having a mastectomy without have a reconstruction.
Then I found Annie the breast care nurse, who made a home visit with beautiful lingerie and a breast fillet. She also mentioned to me, she was visiting three other women in my neighbourhood after me. I learnt I wasn’t alone. All of a sudden I felt empowered and confident l could pull my new reality off, without anymore surgeries. The next day I left the house in an old tight tee and haven’t looked back.
The right side feels freed. I can roll over at night on that side and not feel the implant. I could give it another crack, but first I’d have to wake up in an expander and live with that for 8 weeks and then face the truth that the incision line may not repair.
In the old days, the mastectomy and reconstruction were done 12-18 months apart, allowing the body time to heal and recover. In hindsight, maybe this would’ve been a better option for me, l may have had a better chance at keeping both implants.
Knowing what I know now I’d undergo the mastectomy and not do the reconstruction, which means my pectoral muscles would never have been cut and would still function properly. I would still have found Annie my new BFF and feel whole and complete, without losing 18 months of my life continuously recovering on the couch.
My 11-year-old son said to me after the implant was removed, “I just want a functioning Mum. I don’t care if you have a boob or not”. This was music to my ears. If the only positive thing to come out of this experience is teaching both my boys never be with a person for their looks, or body parts, it’s a blessing.
I’m back skiing, travelling, working, a functioning mum and grateful for the gift of knowledge and knowing there are scientists out there devoting a lifetime of study to shutting this genetic mutation down.