Leonie’s Breast Cancer Journey

My breast cancer journey began back in September 2021 when my partner felt a lump at the bottom of my right breast.  As soon as he pointed it out to me and I felt it for myself and remember thoughts running through my head of “How long has it been there?” “Is it normal?” “How have I not felt this before when putting on my bras or in the shower?”  I will forever be grateful to him for saying something to me as soon as he felt it as I could have had a very different journey than the one I did.

I have a strong family history of cancer on both sides of my family with breast cancer affecting an auntie on my dad’s side and an auntie, a cousin and my grandmother on my mum’s side.  Even knowing my family history, I never checked my breasts on a regular basis.  It wasn’t because I didn’t want to know or thought it would never be.  It just never crossed my mind.  I remember talking about that I should go and get a mammogram given my aunties were 38 & 48 when they had breast cancer for the first time, but I just never followed it up.  So when I felt my lump I was secretly hoping that it hadn’t been there that long.

I didn’t waste any time contacting the Doctor and getting it checked out.  I think it was within a few days I had an appointment with my Doctor.  My Doctor sent me off to get a mammogram, ultrasound and a biopsy.

I was dreading breaking the news to my mum that I had found a lump as she had just lost her sister to pancreatic cancer in the May who previously had breast cancer in 1987 which reoccurred in 2018.  We had also lost my cousin on my dad’s side to brain cancer in the August.  So cancer caused our family a lot of heartache in 2021 and now I was about to break some news to her that could potentially mean I had cancer.  I remember her words as soon as I told her, “oh no!”  I reassured her that I would be fine, that I didn’t know what I was dealing with just yet as I needed further tests but it will be what it will be and I will do what I need to do.  I wasn’t worrying and I told her not to worry (I know hard for a mum to do with children of any age).  For some reason I really was calm and have been right throughout my breast cancer journey.  I know this has shocked a lot of family and friends along the way but that is how I have handled my whole journey along with staying positive, making the best of an unfortunate situation, having a laugh but also being practical, doing my research, dealing with the facts and just doing what I need to do to.

Within a few days I was booked to have my very first mammogram followed by an ultrasound and biopsy.  To my surprise the mammogram wasn’t as uncomfortable as I first thought it would be.  My lump didn’t show up on the mammogram so thankfully I had an ultrasound as it showed up clearly on that.  While I was on the bed for the ultrasound they took the biopsies.  Local anaesthetic was used to numb the area but when they took the biopsy it still stung a bit.  I lay still focusing on the pictures in the room and my breathing.  I had a total of 3 biopsies taken.

The results didn’t take long to come back and within 5 days I was back in the Doctor’s office receiving the news that would start my breast cancer journey.  It was on the 6th October 2021 when my results were confirmed, at age 43, I had breast cancer.  I remember the Doctor apologizing for having to give me the news and I said to him “that’s ok.  It is what it is.  What do I need to do now?”  I was then referred to a breast surgeon at GV Health to discuss surgery.

As soon as I received my breast cancer diagnosis, I started telling close family and friends.  I have two teenage sons living at home with me and a Step Daughter and I felt it was really important not to hide any information from them and have kept them up to date with what’s going on.  Once again I was reassuring my mum, and everyone else, that I was ok and I still wasn’t worrying as I didn’t know what I was yet to deal with and would deal with it when I knew more.  It has been important to me to share updates with my close family and friends along the way.

Taking the positive out of a situation that was outside of my control I would joke around and let them know if I had to have chemo, I would be buying a purple wig because I always wanted purple hair.  I remember joking that I would have to upskill someone else in my family to attend appointments with me to be a second pair of ears as that was normally my job in the family.

Leading up to the appointment with the surgeon I got an exercise book and started writing down the family history of cancer.  Across both sides of the family we have breast, liver, throat, uterine, urethra, bowel, brain, pancreatic, prostrate and lung cancer.  I also have the BRCA2 gene on my father’s side.  All of my family members except for one auntie and one uncle who have been affected by cancer have since passed away and I remember thinking to myself, while trying to gather as much detailed information as I could, I wished we had of started gathering this detailed information sooner when these family members were still alive, so the information was accurate.  This exercise book soon became a place where I wrote all the notes from my appointments and also a place to write down lists of questions that I needed to ask.

My sister came with me to the appointment and has been by side right throughout.  I have had so many wonderful people support me during my journey, but I have been extremely thankful for having my big sister by my side right throughout.

At the appointment with the surgeon I was told the lump was on the small size, measuring approx. 2cm.  I was glad to hear that it was on the small size as hopefully that meant I caught it early.  Michelle, the breast care nurse from GV Health, was in the appointment as well and has been a great support right throughout my journey.  If ever I have a question or need help arranging an appointment Michelle has been my go to person.  She has also been great in breaking down the information that you get given.  The surgeon asked for my family history of cancers, and I had a little chuckle when I opened up my book and said, “Which side would you like to start with?”  He looked at my book and said “oh ok”.  As soon as I told him that we had the BRCA2 gene on my dad’s side he suggested now was a definite good time for me to have that test as this could change my treatment plan.  Without knowing if I had the BRCA2 gene at that point in time, not knowing how long the results would take and not wanting to wait too long I decided to proceed with being put on the waitlist for a lumpectomy and sentinel node biopsy.  If in the meantime my BRCA test results came back as positive I could change the course of treatment.  At that stage I wasn’t thinking of opting for mastectomy however, I had already made up my mind that if I were to have the BRCA2 gene I would have a mastectomy.  It was just a no brainer for me if I had the gene however, I didn’t want to lose the shape so I knew I wanted a reconstruction.  I was glad that I knew what I wanted going into this appointment because when I mentioned this to the surgeon, he informed me that this couldn’t be done at GV Health and I would have to be referred to Melbourne, which he was more than happy to do.

At the end of October I had my lumpectomy and sentinel node biopsy.  It was a day procedure and I was home that night.  Part of this operation is having a Blue dye injected in to my breast, just near the nipple, to help locate the sentinel node.  So my first stop was to the Nuclear Medicine department.  I remember Michelle, the breast care nurse, explaining that the injection would be a short, shape and an intense pain.  When I was laying on the bed she was right beside me and held my hand while they injected the dye.  Thankfully, and to both her and my surprise, I didn’t feel it.   I then had to massage my breast to help the dye move through the lymph system and then they started the scans.  The sentinel node was marked and I was ready for the procedure.  The lumpectomy was successful at removing the whole cancer and a good margin around it.

I am a visual person and was looking to find examples of what my breast would look like after having the lumpectomy.  I couldn’t find anything that would resemble what I might look like so I was thankful that my breast didn’t change shape too much.

After a few days of rest I was able to work from home however, I couldn’t lift anything heavy for 3 weeks eg. Heavy washing basket or pot of water and had exercises to do.

My post op appointment confirmed my cancer was 2cm and thankfully it hadn’t spread to the lymph nodes.  I was really happy to hear that.  I had told myself heading over to the post op appointment that I caught it early and it hadn’t spread.

The next specialist I needed to see was my Medical Oncologist who confirmed more details of my type of cancer.  It was Estrogen Positive 90%, Progesterone Positive 10% and HER 2 negative.  It was type 2 which is considered early.  He also said that it wasn’t the best cancer to have (fast growing) but I picked it up early.  On paper I didn’t need chemotherapy but he was keen to have my tumor specimen sent off for an EndoPredict test which would show if I would benefit from chemo.  As much as I had hoped I didn’t need to have chemo, I decided to have the test to find out.  We also discussed treatment options which included chemo, radiation and hormone blocking therapy however, if my BRCA2 results came back positive this could change.  I basically had to wait for both test results to come back before a treatment plan could be finalized.  While I waited for the test results I read information that was given to me and did some research online to help me understand what each treatment involved.  I was also sent off for some baseline tests (CT & Bloods).

I was at the supermarket when I got the call from my Medical Oncologist saying my BRCA2 results had come back and I did have the gene.  From that point on I knew I would be having a mastectomy and reconstruction as some stage during my journey.   That’s when I started researching mastectomy and reconstruction procedures and was amazed at how many different types of mastectomies you can have and the different options for reconstruction.

Having the BRCA2 gene, I was also referred to a genetic counsellor at Austin Hospital.  After completing a Family History Questionnaire, I met with a counsellor via telehealth.  My auntie who has the gene also completed the same process so they were able to link my questionnaire with hers and determined that I had inherited the gene from my dad.  My dad had throat cancer and pancreatic cancer and passed away over 10 years ago from the pancreatic cancer.  I was rated at 80% chance of developing breast cancer in my lifetime and 17% of developing ovarian cancer (anything over 5% or ovarian cancer is considered high).  I am also at a higher risk of developing pancreatic cancer.  There is no early detection for pancreatic cancer however, since I have a family history of pancreatic cancer, I may be eligible to enroll in a pancreatic cancer screening research study at Austin Hospital which I will be looking into.  There is also no effective screening or surveillance for ovarian cancer, so I have chosen to have my ovaries and fallopian tubes removed before I turn 45.  My children have a 50% chance of inheriting this gene and can get tested once they turn 18.  My siblings also have a 50% chance.

When I received my breast cancer diagnosis, I had hoped that I didn’t need to have chemo but the EndoPredict test showed that I would reduce my chance of reoccurrence (from 28% to 13) by having chemo.  So the next step in my journey was soon to become 4 cycles of chemo.  My first cycle started on 8th December 2021 with the first 2 cycles being completed at GV Health and then I was able to have the last 2 cycles here at Kyabram District Health Service (KDHS).  As it was during COVID-19 I wasn’t able to have anyone in with me during chemo, so my sister had to drop me at the door and come back afterward to pick me up.  When I had chemo in Kyabram, I was able to drive myself in.  Not having anyone with me was ok.  The first cycle I had the breast care nurse come and see me and go through some things so the time passed relatively quickly.  After the first cycle I knew what it involved so kept busy watching Netflix on my mobile phone.  Each cycle took approx. 2.5 hours.

I’m a fan of a countdown (countdown to birthdays, countdown to holidays etc.) so as soon as I started chemo, I started the countdown.  I accepted the fact that chemo was going to benefit me even though I had hoped I didn’t need it so I changed my mindset to “let’s get this done” and went in to this treatment on a mission to getting it done.  My cycles of chemo were 3 weeks apart with the side effects generally being worse within the first 2 weeks.  I also made the decision early on that I would continue to work through chemo if I was well enough to do so and thankfully, for the majority of it, I was.  I soon learnt that my side effects didn’t last for too long so I used that knowledge to flip my mindset when they were more severe.  For me, side effects included loss of taste, texture of food was affected which made eating certain foods not appealing, skin rashes, my tongue and mouth changed texture, body aches, tiredness, sores in my nose, hair loss (head, eyebrows, eyelashes and body), blocked ears, hot flushes, no menstrual periods, headaches, sore/sensitive fingernails and asthma type symptoms.

I also had a reaction to the injection they give the following day after chemo to help boost the white blood cell count.  Within 1.5 hours of getting this injection I would suddenly become hot all over and find it hard to breath but within 15 minutes it stopped.  The first two times I was at work as I received my injections in Kyabram and worked before and after, so I went to UCC to get checked out.  My obs were fine so I knew that I would be ok.  The last two cycles I went home after the injection, rested and waited for the reaction to come and go.

Not long after cycle 2 I developed a cough, felt generally unwell and had a high temperature.  After receiving IV antibiotics & having a PCR test in Echuca hospital I was sent home to isolate and await my test results.  This all happened just after New Year’s Eve where PCR tests were taking a long time to come back so I had completed my full 7 days isolation before finding out I actually had COVID-19 that whole time.  Thankfully I only felt unwell for 24-48 hours and was then feeling well enough to work from home for the duration of my isolation period.

The most visible side effect was losing my hair.  I have had long hair most of my life so I wasn’t sure how I was going to feel knowing I would lose it all.  I was offered to use the cooling cap but it only had a 50% success rate and it would mean I was in the chemo chair longer.  I decided not to do this and just embrace losing my hair.  I had to flip my mindset and make the most of this unfortunate situation so I made the decision to embrace this and have fun with it.  I purchased two brightly coloured wigs and bright coloured headwear with every intention of wearing them but found that that time of year far too hot and only wore the headwear a couple of times.  I had also always wanted to dye my hair purple but was never game enough in case it looked horrible.  Well, I thought, now is my chance as it’s going to fall out anyway so if it looks horrible then it won’t be long and it will all be gone anyway.  To my surprise it looked good and was soon wishing I had of taken the chance a long time ago.

I decided I would shave my hair when it came time.  I never had a set plan but would know when it was the right time.  It took around 14 days after my first cycle for my hair to start falling out.  It started off as a few more strands on the brush and soon came out in clumps in the brush, shower and when I ran my fingers through my hair.  I remember being in the shower one time and I could feel the clumps of hair run down my back as I was standing under the water.  I persevered for as long as I could but soon my hair was far too thin that I knew the time was coming for me to shave it.  We had our family from NSW coming to visit on Boxing Day.  These family members were the family of the cousin we lost in August to brain cancer.  When I woke up that morning I knew today was the day so I let my sister know as she was also going to shave her hair with me.  Sharing this moment with them was very special and one I hold near to my heart.  With family around me and one of my best friends on video call, my eldest son did the honors and shaved my hair.  My cousin’s daughter also got involved and tidied it up afterward. Next, it was my sister’s turn.  I had a go first and then my cousins children finished it off.  It wasn’t that long ago when they were doing the same thing for their dad (my cousin).  I wasn’t sure how I would feel shaving my hair but to my surprise it felt good.  One of my workmates gave me some great advice and said that after I had shaved my hair I needed to go outside, close my eyes and feel the breeze blow over my head as it felt amazing.  Well I can agree, it was an amazing feeling.  This day was made even more memorable and emotional as not only did I get to share this experience with family but we also laid some of my cousin’s ashes to rest with my brother out at the cemetery.

My hair has grown back a darker colour and curlier but I am loving having short hair.  I am ready in half the time 😊.

I also ended up losing most of my eyebrows and eyelashes.  I was worried in the beginning about having to draw on eyebrows as I am not good at this.  I signed up to a Look Good, Feel Good session where they went through how to apply makeup to try and get some tips. Thankfully I got the hang of it and never had to take my best friend up on her offer to draw them on with permanent Texta using a coat hanger for a guide 😊.

I finished Chemo in February 2022.  Next on my treatment plan was hormone blocking therapy.  I have a Zoladex injection once a month and have to take a daily tablet, Exemestane, that stops the production of Estrogen.  I will be taking hormone therapy for 5 years.  Once I have my ovaries removed I will no longer need the monthly injection.  The main side effects of hormone therapy is menopause symptoms.  My side effects from the hormone therapy include: increased hot flushes, skin has become more sensitive, muscle pain and stiffness, no menstrual period, brain fog and insomnia.  I found an amazing USB chargeable fan which I call my menopause fan 😊.  Makes getting through the hot flushes so much better and it’s portable, win win 😊

In March 2022 I started the planning for my mastectomies and reconstruction.  Initially I had thought I would opt for implant reconstruction but the more research and thinking I did I was leaning more toward a DIEP FLAP reconstruction.  This type of reconstruction involves taking skin and fatty tissue from your lower abdomen along with a blood vessel and using that to reconstruct the breasts. The stomach is then stretched down and a new belly button created (similar to a tummy tuck) with an incision scar going from hip to hip.  The blood vessel is connected to a blood vessel in the chest via microsurgery.  Initially I had concerns about this procedure as I wasn’t sure if I could live with a scar from hip to hip and I feared that it might fix one body image issue only to create another.  After speaking with a couple of women who had this procedure before, weighing up the pros and cons I made the decision this was the procedure for reconstruction that I wanted.  Along with the reconstruction option I also had to think about what type of mastectomy I wanted.  I wasn’t sure what options would be available to me given that I have the BRCA2 gene.  Thankfully I was able to have a nipple sparring mastectomy.  If I wasn’t able to have that I had already decided I was going to get a chest piece tattoo rather than have nipples tattooed.  Once again there were jokes shared around what tattoo design I could have had.

Part of the planning also involved making the most out of this situation so I decided to have a mastectomy party.  I wanted to say goodbye to the old and welcome the new.  I had it all planned out with games and a cake only to have to postpone as I was called up earlier than I thought for my surgery.

After several trips to and from Peter MacCallum and pre-op tests, on the 7th April 2022 I had my Bilateral Nipple Sparring Mastectomy with immediate DIEP FLAP reconstruction.  Accompanied by my mum and sister we headed down to Melbourne the night before for my morning surgery.  Thankfully my mum and sister we able to come up with me and wait until I was called up.  After giving mum a big hug as she wiped away a few tears I reassured her that I would be fine, and I was taken into the theatre area.  After being marked up by the Plastic Surgeon I was soon ready for my long operation.  Normally the surgery would take 6-8 hours however, mine took 11 hours as there was only one breast surgeon.  Back on the ward obs were taken every half hour in the beginning and then slowly were stretched out to hourly, 2 hourly etc.  When they transplanted the tissue, they kept an ellipse of stomach skin on the bottom of my breasts which they used to check that the flap was alive and getting blood.  To do this they used a portable Doppler machine and placed on a stitch they put on each skin paddle to help indicate where the blood vessel was.  Sometimes they got it straight away and other times it was playing hard to get but when we all heard that whoosh whoosh sound it was a sense of relief.

Within the first 48 hours the plastics team could see there was an issue with blood supply to the breast skin.  What I thought was purple bruising, to them was an indication my skin was not getting enough blood supply.  The plastic surgeon had warned me at my initial consult that a patch of skin, particularly, on my right breast may not survive due to the location of the incision from my lumpectomy and where he would make the incision for my mastectomy, so I had this in the back of my mind during recovery. They applied a special cream and covered with a dressing for the first couple of days.  After that it was up to my body to do the rest of the healing.

Getting up and moving around was important for recovery so after a couple of days in bed I was up and sitting in a recliner chair.  I had 3 drains that I had to carry around in a bag the hospital gave me.  One in each breast and one in my abdomen.  Getting in and out of bed was a bit tricky as I couldn’t use my stomach muscles and I couldn’t use my arms to pull myself up, but I soon got the hang of it.  A rolled-up towel provided some extra support to my abdominal surgical site while moving around.  Walking was more of a bent over shuffle.  Slow and steady.  I was soon able to manage things by myself in hospital and within a few days I no longer needed the strong pain medication, regular Panadol was enough.  I expected the pain to be worse than the C-section I had with my eldest son but I was surprised to find it wasn’t that bad.  While in hospital I slowly started extending my walks from the bed to the bathroom, around the room, out in the corridor then to the outdoor patient lounge around the corner from my room.  It felt great to be able to sit outside and get some fresh air.

I was lucky that at the time I was in hospital, visitors were allowed so it was great to have some visitors during my stay.

I was in hospital for 6 nights and, thankfully, had all drains removed before being discharged.  I wasn’t looking forward to having the drains removed as I had heard a horrible experience a friend had had with hers.  Thankfully I didn’t feel a thing.  I was discharged with dressings on both breasts and my stomach and new belly button.  Unable to get the dressings on my breasts wet and not being able to lift my arms above my head, showering became a workout.  I was grateful for not having to worry about hair to look after during this time that’s for sure.

Instead of coming home I stayed with my niece, who lives in Melbourne, for the first week after coming out of hospital.  I had a room all set up just for me and, along with my sister, she became my carer for the week.  I didn’t have to lift a finger as they had my every need handled.  This really helped with my recovery as I couldn’t lift anything heavy, cook, clean etc.  All I basically was allowed to do was sit, lay down, walk and just relax and let my body heal.  I was relaxed but I can’t say the same thing about my niece.  She was freaking out every time I got up and walked around but I reassured her I was ok and that walking was a must for recovery 😊

Things got easier each day and by week 3 after surgery I was taking slow walks around the block at home.  Walking straighter got better each day also.  As a side and stomach sleeper, it was a challenge having to sleep on my back for the first few weeks.  It took a while to be able to sleep on my side as it hurt my stomach.  Even rolling from one side to the other was a very slow process.

I had to wear compression garments 24/7 for both my stomach and breasts for 6 weeks to help with healing and reduce swelling.

I struggle at asking for help but during my recovery I have learnt that there were times I needed help from those around me.  I couldn’t drive for about 6 weeks.  I couldn’t lift anything over 1-2kgs so needed help with general household chores and grocery shopping and really had to be mindful of doing things around the house eg. moving pots of water, not filling a kettle to the top etc.

Over the next 2 months I had to keep dressings on both breasts 24/7 with regular dressing changes either by myself at home, by the surgeons at Peter Mac during consults or here at KDHS.  As predicted by the Plastic Surgeon there was a patch of skin on my right breast that did become necrotic.  I also had a small patch on the left breast, but it healed completely without needing treatment.  I had some of the dead skin removed during one review appointment with the plastics team.  I got an infection in the right breast which required daily dressings for a while.  Amazingly though my body did a fair bit of healing underneath the necrotic skin and the area on my right breast ended up being much smaller than first expected.  Initially the Plastic Surgeon thought I may lose my right nipple but thankfully I didn’t.

I was back in surgery at Peter MacCallum in June 2022 to have the area of necrotic skin repaired and also removing the skin paddles from the bottom of my breasts.  Thankfully I had those skin paddles there as they used some of that skin to cover the area on my right breast.  This was a much smaller operation and after one night in hospital I was back home.  I was once again back having regular dressing changes.

After having nearly 12 weeks off work I was healed and back to work.  I am learning to love the new me.  My stomach scar looks better than what I thought and I know it’s still a work in progress for my final breast results.  The DIEP FLAP reconstruction is more than one procedure, and I will have another operation called Phase 2 where they can do some fat grafting (liposuction and transfer the fat to the breasts) to help improve the final shape of my breasts and improve any imperfections.  I have also developed a small hernia which will need to be repaired at some stage.

Since my mastectomy and reconstruction, I have developed some numbness in my fingers.  At first it was a horrendous burning sensation that would hit during the night and was then numb on and off all day.  This makes doing normal everyday things a bit challenging, but I am managing.  It has improved over time but not completely gone. I will be having a nerve conduction test in October this year.

I am also on a waiting list to have my ovaries and fallopian tubes removed to further reduce my risk of developing ovarian cancer.  It is recommended that I have this done before I turn 45.

If there is anything else that I need to do or remove to further reduce my chance of developing another cancer, then I will do it.  I want to be here for a long time so “if it’s got to go then it’s got to go”.

Going through this journey I never once questioned Why me?  I accepted that this was part of my journey through life.  I have family members that got through their breast cancer journey, and I will as well.  I am looking forward to finishing off having all the operations and getting back to living life.  Plus, I have a mastectomy party to reschedule 😊.  Although life is starting to get back to normal it is a new normal.  I will forever be grateful for the special people in my life, the support I have received from The Gift and find comfort in knowing those who have passed are always watching over me.