I have been reminded frequently on social media that October is breast cancer awareness month.  My personal journey of recovery from double mastectomies 17 months ago has not been an easy one.  As I reflect on the last 17 months, I can see that having mastectomies changed my life … for the better.  This is my story.

Being Diagnosed With BRCA2 Gene Mutation

I was diagnosed with a BRCA2 gene mutation in February 2020.  Having this mutation increases my risk of breast, ovarian, pancreatic cancers, melanoma, and in men, prostate cancer.  I was just about to turn 54, the same age my mother died from cancer.  The decision to have prophylactic risk-reducing surgeries was an easy one for me.  I had my ovaries removed in March and bilateral mastectomies in May 2020.

Leading up to those surgeries I was anxious and extremely stressed.  I lost a lot of weight because the fear of getting cancer was overwhelming.  I had had all the screening available – MRI’s, CT scans, Ultrasounds and blood tests for tumour markers.  Even though my tests had all come back negative there was still the fear that the surgeons would find cancer in my breasts or ovaries.  This has happened to many women undergoing prophylactic surgery.

Undergoing Risk Reducing Surgeries

My surgeries were not straightforward.  I had complications after both and I still live with the chronic health issues.  I haemorrhaged after my mastectomies and needed further surgery twice, as well as four blood transfusions.  The recovery from those surgeries lasted months because I wasn’t able to do any exercise for six months due to the risk of swelling.

Prior to those surgeries I was active and able to work.  I walked my dogs 3km per day and did yoga.  Unfortunately I had chronic back pain which prevented me from running and high impact exercise.  I had migraines frequently and felt tired all the time.  Shift work knocked me around and I felt pretty miserable a lot of the time.

Complications Following Surgeries

The first surgery to remove my ovaries uncovered a problem with my bladder and kidneys that had been grumbling along for a long time.  It was a problem that I couldn’t ignore anymore and was the cause of a lot of my chronic back pain.  I now have that issue under control so I actually take it as a blessing that I discovered the problem because if it had been left untreated any longer I would have been really unwell.  My body had been telling me that there was something wrong for months and it took a health crisis to reveal it.

My mastectomies were meant to be a straightforward procedure.  The surgeon planned to remove all my breast tissue, including the nipples, but spare the skin, and insert implants in the same procedure.  The surgery went well but I haemorrhaged on the left side the next day.  I lost a lot of blood, most of it collecting under the skin.  The surgeon took me back to the operating theatre to stem the bleeding.

A Prolonged Recovery From My Mastectomies

The fluid that remains under the skin following a haemorrhage is called a seroma.  That seroma lingered for months, becoming infected and requiring further surgery three months later.  I was under strict doctors’ orders not to exercise because that would increase the risk of further seroma developing.  My surgeon allowed me to gradually increase my walking but everything else was off limits.

I lost a lot of muscle tone during the six months that followed.  This prevented my return to work as a Registered Nurse because I wasn’t able to fulfill my duties, which include being able to perform CPR and patient cares.  I was off work for 11 months in total.  I really struggled with that.  My mental health deteriorated as I felt that my purpose in life was gone.  My role as a nurse meant so much to me after doing it for 35 years that I felt lost without it.

Outpatient Rehabilitation After My Mastectomies

After six months of not exercising, my surgeon finally gave me permission to return to yoga.  Immediately after my first yoga session I had severe muscle pain and cramps.  I knew I wouldn’t be able to get my body strength back without professional help so I asked my GP for help.  He referred me to an Exercise Physiologist.

I had five months of outpatient rehabilitation under her supervision.  My muscles had lost so much condition that I could only improve slowly.  I was in a lot of pain as my muscles regained their strength and my progress was slow.  Despite this I was determined to get strong enough to return to work so I worked hard and over time regained my upper body strength.  I needed to be able to perform CPR which uses multiple muscle groups in your upper body, and when I finally could do that I knew I was ready to return to work.

Building Emotional Resilience During My Recovery

I had been seeing a psychologist to help me to adjust to these massive changes in my life.  I had gone from a healthy, productive member of society to someone who was too unhealthy to work.  My brain was still functioning but my body had let me down.  I had cried buckets of tears during those months off work and I was depressed.  The psychologist has helped me to reframe my thinking, and deal with those negative feelings in a positive way.  I still see her regularly because I feel that she helps me immensely.

I was able to gradually return to work in April.  It was such a huge achievement to reach that goal.  I never realised before how much my job meant to me.  I will never take working for granted again and I appreciate that I have such a supportive boss.  Because I am much fitter now than before my surgeries, working no longer knocks me around like it used to.  I still get fatigued but I now make sure I have a rest instead of pushing through.  

Reaching My Goal of Returning to Work

I really lacked confidence before, even though I had been nursing for a long time.  My confidence grew by going through the rehabilitation process and by achieving a pass mark on a course while I was off work.  I stepped straight back into my role relatively easily, and had the support of my colleagues.  The confidence comes from knowing that I am strong enough to overcome major challenges.  I worked hard to get my life back to normal, and I’m proud of my achievements.

How My Mastectomies Changed My Life For The Better

I chose resilience as my Word of the Year 2021.  I wasn’t feeling particularly resilient at the start of this year because I was still in the early stages of rehabilitation and was struggling mentally.  By persevering, and achieving that goal, it made me realise that I am resilient.  I have continued to do the exercise regimes set for me by the Exercise Physiologist.  I love the feeling of being strong and fit and I know it helps me manage my daily life better.

Even though my surgeries did not go to plan, and caused life altering issues for me, I do not regret having them done.  I no longer have the fear of getting ovarian or breast cancer as my risk is reduced to less than 1%.  My brother was diagnosed with Stage 4 Prostate Cancer a few months after that so I feel like I dodged a bullet.  I still have to have frequent screening for melanoma and am at risk of pancreatic cancer, but on the whole my health has been greatly improved.

My outlook on life is much more positive now.  I am more relaxed and rarely get a migraine which I attribute to dealing with stress better.  Fortunately, I was always a homebody, and feel blessed to live in such a lovely place after staying home so much during my recovery.  I also had time to spend with the people who mean the most to me, in particular my mother-in-law who passed away in May.  Every cloud has its silver lining, as the saying goes.

Breast Cancer Awareness

If you would like to read more about my story, all my previous posts are listed on my resource page, BRCA Gene Mutation and Cancer Awareness.  Don’t forget that October is Breast Cancer Awareness month.  You may like to read these articles:

• October is Breast Cancer Awareness Month;
• How to Perform a Breast Self Examination (and Why)
• Know Your Family and Personal Health History