My name is Lisa and this is my story.
It was supposed to be a time of great joy, December 24th, 2007 and my little baby’s first Christmas. Unfortunately I was in quite a bit of pain from a lump I had developed in my right breast. I was breastfeeding at the time and assumed I had a blocked milk duct. I decided that if it was still sore after Christmas I would see my doctor.
On December 27th I went to see my GP but she was on holiday so I saw the other doctor in her clinic. I was prescribed antibiotics but told to come back a week later to see my regular GP for a check up. The pain disappeared but the lump did not. When I saw her she was very concerned and booked me in to see a breast surgeon and to have an immediate ultrasound. The ultrasound confirmed the solid mass in my breast but stated that it appeared to be a milk cyst.
The following week I went to my breast surgeon to get it drained. After a few tries with different sized needles (ouch!!) the lump wouldn’t drain. A fine needle biopsy was performed.
A week later I was sent for a core biopsy as the results weren’t conclusive. Instinctively I knew things were looking grim. During the biopsy I was trying to read the faces of the staff in the room and panic was setting in. I was so scared and with very good reason. After four more days of waiting I went to my breast surgeon to get my results. I went by myself as I didn’t want to worry my husband. The news was pretty bad. It was an aggressive breast cancer, triple negative, grade 3. I felt as if I had been kicked in the stomach and couldn’t breathe…for the second time in my life. The first time was at the age of 14.
My mother had been complaining of pains in her pelvic region. She was diagnosed with Ovarian Cysts and she was booked for surgery to remove them. When they opened her up she did not have cysts. It was advanced ovarian cancer that had spread considerably. Over the next three years she fought so hard with three separate types of chemotherapy, each cycle making her so severely ill that she needed to be hospitalized for three days. It was heartbreaking to watch and see your mother suffering so much. Eventually we were told that no more treatment was available and she passed away in 1994. I felt that part of me died also on that day and I knew I would never be the same person again.
The time of my diagnosis was a blur. I was a shaking mess and so grateful to meet the most wonderful breast care nurse imaginable. She sat and talked with me while my breast surgeon organized my lumpectomy. I was also so concerned about my son who was 9 months old. I was told I would need to wean him immediately and I knew he wouldn’t take a bottle. He wanted real boobs or nothing. I ended up taking cabbage leaves to hospital stuffed in my bra. The last thing I wanted was to get mastitis. Luckily my milk dried up fairly quickly without anymore complications.
After my lumpectomy and sentinel node biopsy we had more bad news. The sentinel node was positive for cancer meaning an axillary clearance was required. As my cancer was linked to having a genetic mutation it was decided a mastectomy was best.
A few weeks after surgery I began chemotherapy. To give me the best chance of a cure I had dose dense AC (every 2 weeks) for 4 cycles and 12 weekly taxols. The AC was so difficult, the nausea was horrible and I felt poisoned. I was always very anxious about losing my hair as it had been long all of my life. Organising a wig and beanies to wear for winter made me feel more prepared for when it did fall out. Chemotherapy finished in July, 2008. Two weeks later I began genetic testing.
I had 3 week break from treatment before starting radiotherapy. It was every weekday for 5 weeks. I was okay until week 4, when the fatigue and burning set in. I also developed a skin infection and the burn was very painful. It took every bit of strength I had to go back for my last treatment.
In October I got the call that my genetic testing results were in. They were extremely unusual with two positive results. I have BRCA 1 and 2 mutations. Apparently there are only 32 known families to have both mutations in the world.
I am about to begin the next stage of my journey. I am having a prophylactic mastectomy and also beginning to have a breast reconstruction. Although I am very nervous, I cannot wait. No more worry about a new primary breast cancer, as well as getting new breasts.
It is 18 months since my cancer diagnosis and each month that goes by cancer free is a blessing that gives me confidence that I might defy my genetic status.
Wow, time flies by when you are having fun! It has been 7 years since I wrote my personal story. The good news is that I am still cancer free, living a very full and busy life. There have been ups and down, many more surgeries and times of great personal growth.
I did have my prophylactic mastectomy with expanders. It was a tough surgery and quite painful for a few weeks. It really does feel like an elephant sitting on your chest during the expansion process! Radiotherapy did affect my skin, so expanding my skin was a slow and delicate process. It took 20 months of waiting to have my implant exchange and while the implants were much more comfortable, I was never fully happy with the end result. My skin was extremely thin, tight and discoloured due to a lack of blood flow. I was a bit worried that my skin could rupture but it seemed to be hanging in there, so redoing my reconstruction could wait. I had other plans!
At the age of 34, I sought the expertise of specialists at The Royal Women’s Hospital in Melbourne. I was worried about when to remove my ovaries as I had watched my Mother pass away from this cruel and insidious disease. I was determined to avoid an ovarian cancer diagnosis at all costs. It was at this appointment that the doctors brought up the idea of another child. They explained that there were options of IVF, Preimplantation Genetic Diagnosis (PDG) to screen for embryos without the BRCA 1 and 2 mutations that I carry. My head was spinning. I was also worried that pregnancy may cause my cancer to reoccur but my medical specialists assured me that there was no evidence to support my fears. I asked to be booked in for reproductive assistance as I didn’t even know if chemo had caused me to be infertile. I was told to wait a few weeks and that I would be contacted with an appointment date to get started. It was during this time that I started to feel very unwell and extremely cranky. A pregnancy test confirmed that I was indeed going to have my second child!
In 2012, my second son was born. It was so amazing to be able to bring another life into the world, after such a difficult time. Unfortunately he suffered from medical issues such as reflux, food intolerances and constant ear infections. Finding the right specialists to assist him were difficult but we eventually got on the right path to assist him to thrive and be a healthy, happy boy. While he was very unwell I knew that I needed to act on ways to prevent getting ovarian cancer, without throwing myself into surgical menopause that would come with removing my ovaries. I was scared of the impact on my body, the unknown of how my body would deal with the sudden loss of hormones.
Some research had shown that BRCA related ovarian cancer may begin in the fallopian tubes, so removing them may in fact reduce the risk of the cancer developing. I also knew that recovery would be fairly easy, so I went ahead with the surgery.
When my son’s health improved I decided it was time to remove my ovaries. I was approaching the age of 38 and as the risk of ovarian cancer dramatically increases at the age of 40 for BRCA 1 mutation carriers, I felt it was time. My specialist recommended HRT and after a few weeks of headaches, my hormones have settled and I have never felt better. I wish I hadn’t worried so much about having the oophorectomy.
It was while attending the 2015 Pink Hope Conference and listening to the presentation by the plastic surgeon, that I decided to revisit the idea of having my reconstruction revised. I made an appointment to discuss my concerns and he agreed that my implant was at risk of rupturing due to the damage caused my radiotherapy. After waiting a few months on the public list, I had a Latissimus Dorsi reconstruction. I am now almost 4 weeks into my recovery and I’m doing really well. Cosmetically, the result is so much better too.
So, what have I learnt over the last 8 years of knowing I am a BRCA 1 and 2 mutation carrier?
I am much stronger than I ever imagined.
My friends and family are so important to me. You know who you are and I love you all dearly.
Book holidays, enjoy life to the full every day and make lasting memories. None of us know what the future holds.
Do a job that you love. I returned to full-time primary teaching and it is so rewarding.