How My Mastectomies Changed My Life … For the Better

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.

Stronger and fitter after my mastectomies.  Image shows Christina Henry and her dog Banjo, on their daily 3km walk
Stronger and Fitter After My Mastectomies

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:

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Being a patient in the midst of a pandemic

As I wrote in my previous post, I have been in and out of hospital since March, pretty much the whole time Australia has been in lockdown. Going through health issues during this time has been challenging to say the least. Being a patient in a pandemic has increased the stressful experience a massive amount. I was lucky to have my surgeries at all. Elective surgeries were put on hold to make way for an influx of Covid-19 patients.

Getting through the door of a hospital is like running the gauntlet. As you enter the building you are met by staff who screen you for signs of a fever and ask questions about your recent exposure risks. Visitors are limited which is difficult when you’re going through surgery.

My Recovery From Bilateral Prophylactic Mastectomies

On the 13th of May I had bilateral prophylactic mastectomies because my risk of getting breast cancer was 60-80% due to having the BRCA2 gene mutation. The surgery went well. The following morning I developed severe swelling in the left breast. My haemoglobin dropped very low due to bleeding.

I experience a post operative complication after my bilateral prophylactic mastectomy.  In this photo I am severely anaemic.  I had a haemorrhage in my left breast.  The swelling is visible in this photo.
Post-operative complications: My Hb was 63 (normally 120) so I’m extremely pale. My left upper chest is swollen up to my shoulder, compared to my right shoulder where you can clearly see my clavicle. The surgeon operated again to drain 600ml of blood. Not the prettiest photo of myself but it’s true to life

I had emergency surgery to drain the haematoma but continued to bleed into the drain. I lost over 1.2 litres of blood and needed 4 units of blood transfusion. It was extremely scary to go through, and I felt like I’d made a huge mistake to have the mastectomies done.

A Prolonged Recovery Due to Complications

My recovery has been slow because of this setback. I was in hospital for 6 days, waiting for my blood count to get high enough to be discharged. I’ve had some really low periods during the last couple of weeks, days where I’ve been really emotional and cried many times. I guess many women undergoing mastectomies would be emotional. My own low mood is affected by the fact that my surgeries have had complications.

I have been extremely lucky to be in the position where I can have surgery during the pandemic. If I was a public patient my operations wouldn’t have gone ahead at all. I’ve always had private insurance, but that doesn’t cover all the costs. I’m lucky I had funds set aside for emergency as I am thousands of dollars out of pocket.

The Cancellation of Elective Surgeries

Hospitals have been very quiet in Australia because of elective surgery being cancelled. This has worked in my favour because I have been able to have a nice quiet atmosphere to recover. As a nurse I am well aware of how busy hospitals usually are so it was nice to see the nurses looking relaxed and not stressed.

I received outstanding care from the nurses and doctors during my admissions to hospital. I felt very well looked after especially when I had the post-operative bleed. If the nurses hadn’t been so on-the-ball my outcome might not have been so great.

Limited Movement Post Mastectomy

I’m now recuperating at home, which will take time because of the complications. I am very limited in what I can do and need to rest as much as I can. I’m typing this on my mobile phone because I need to limit my arm movements. I’ve never been so reliant on other people for my needs

I have deep appreciation for my husband who has been taking very good care of me. He’s had to shower me and wash and dry my hair and do all the household tasks. My heart swells with gratitude for how he has cared for me and I feel more in love with him for the way he does everything for me so lovingly. He has been my rock through so many things in the past.

Emotional Support For Mastectomy Patients

I have felt loved and supported by so many people in the last few months. Even though we’ve had social distancing laws and can’t always be together, I’ve had many messages of support which have uplifted me when I need it the most. Social distancing hasn’t prevented them from caring.

My boss has been incredibly supportive as well, allowing me to have time off to have these operations and medical appointments. I am really grateful to her for caring and empathising with my situation. It has made a huge impact on my morale going through all my health issues to know my job is secure.

Looking Forward To My Recovery

I’m through all my surgeries now, and on the way to recovery. I am looking forward to gaining some independence back because it’s hard relying on other people. I’m very bruised and I still have drains in. I can’t do much except rest as I’m not able to raise my arms above my shoulders or even go for a walk. I’m really looking forward to the day I can walk the dog.

This year has made me aware of what truly matters in life. It’s not possessions or expensive holidays that count. The things I value now are my health, my loved ones and my independence. I feel very loved by many people and that is the ultimate outcome of a year which has brought unprecedented change to everyone worldwide.

Being a Patient in the Midst of a Pandemic.  How the pandemic impacts your experience of healthcare.  I had a bilateral prophylactic mastectomy in May 2020.  This is an account of how my surgery was impacted due to being a patient in the midst of a pandemic.

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Beating BRCA2 – How it has Affected My Life

I have had my own challenges while the World’s focus has been on the Coronavirus. This is a personal account of how the BRCA2 gene mutation has affected my life.

While the World Has Been Focused on the Coronavirus, I’ve Been Beating Cancer

The World around us changed dramatically between my birthday and my best friend’s birthday three days later. We spent the weekend together with our husbands, the four of us celebrating by staying in a resort and drinking, eating and laughing together. After we went home the restrictions started suddenly so that it would no longer be possible to socialise in that way. Our last weekend together from 20-22 March is the last time we could eat out at a restaurant or cafe, drink in a hotel or even spend time together. It seems like the distant past now.

We still can’t eat out at restaurants together, although restrictions in our State have begun to be lifted. We are unable to cross the border to visit my family who live just an hour south. Social isolation has added another layer to my own health battles that began to unfold this year.

BRCA2 Gene Mutation and Cancer Risk

I was diagnosed with the BRCA2 gene mutation in March. You may have heard about Angelina Jolie having BRCA1 and undergoing bilateral prophylactic mastectomies and a total abdominal hysterectomy a number of years ago. BRCA2 is similar – it increases my risk for breast and ovarian cancer dramatically. It’s a case of not if I develop these cancers, but when.

I knew there was a chance of inheriting this gene about 10 years ago when I nursed my cousin who told me she has the gene. I had genetic counseling back then but it was not very obvious that the gene was on my side of the family as there wasn’t a high number of family members with cancer, especially breast and ovarian cancer. The genetic counselor thought my cousin probably inherited it from her father (no blood relation to me). Consequently, I didn’t get tested and opted for more stringent screening instead.

I’m a huge advocate for screening. I have been having early mammograms and ultrasounds for the last 10 years. Every six months I get my skin checked. My son’s melanoma was picked up during a routine skin test. This was possible because I starting taking my sons for skin checks from a very young age. My son’s melanoma was diagnosed when it was just a stage 1 cancer. Many people ignore things until they’re advanced but that’s not me. I get every little bump checked out because I’ve seen too many invasive cancers as a nurse.

Stage 1 melanoma on the hand of a 24 year old male
My Son’s Melanoma – He was Only 24 Years Old when it was diagnosed. It was a stage 1 melanoma. Surgery completely cured him

The last few years have produced more cases of cancer in our family – my son, brother and sister have all had melanoma and my father had prostate and pancreatic cancer. It was always in the back of my mind that I should probably get tested for BRCA2. I went back to the genetic counselor to be tested. Results showed I did have the BRCA2 gene mutation. I inherited it from dad – I had a 50% chance of having it and my sons then had a 50% chance of inheriting it from me. My first reaction was not for myself, but rather for my sons – “I’ve given them a death sentence”.

BRCA2 Affects Males Too

Telling them was difficult. It would have implications for when they want to start a family, and it might even be a deal-breaker for some women who wouldn’t want to have the risk of having children with a genetic disorder. They surprised me with their reaction, however. Their response was that they’d rather know if they had the gene or not. They were now aware of screening and get any changes in their bodies checked out early. They underwent genetic counseling and were tested for the BRCA2 gene mutation. The results came back negative. We were surprised and ecstatic at the results. Even my son who had a melanoma was clear which is even more surprising).

Risk Reducing Surgery

My first response to finding out I have BRCA2 was to swiftly decide to have prophylactic risk-reducing surgeries. That involves removing the organs most at risk of developing cancer – ovaries (I have a 20-40% chance of getting ovarian cancer) and breasts (60-80% chance). Having nursed women with ovarian and breast cancer for most of my nursing career, I know how devastating those cancers are and I want to avoid them as much as possible.

I had the first surgery on March 30th – a laparoscopic bilateral oophrectomy (keyhole surgery to remove my ovaries). This surgery is low-risk and most people bounce back quickly, with very little complications. Then there’s me. I seem to have the worst luck when it comes to complications to procedures – I went into complete heart block after an angiogram and required CPR. One medication landed me in hospital from a severe allergy. So to have complications after this small operation, while not surprising for me, was a shock to the system all the same.

Complications

I bruised. My abdomen became extremely distended. A lot of pain and nausea. But the worst thing – I couldn’t pass urine. I ended up going home with an indwelling catheter and it unearthed a problem with my bladder that’s probably been there for a long time but wasn’t apparent until I had pelvic surgery. I had follow-up surgery to fix it last week. While there was an improvement, there will be ongoing issues for a long time because my kidney and bladder have been damaged. All my back pain was from my kidney, not my spine after all.

BRCA2 Gene Mutation.  While the world has been focused on the Coronovirus pandemic, I have been battling my own health dramas

My next challenge is Bilateral Prophylactic Mastectomies

This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. After my previous operations I’m scared of having this surgery. I’m more scared of breast cancer though. Someone said to me that I’m brave to do this – I don’t feel brave. In fact I feel just the opposite. The women who have breast cancer are brave. Imagine going through this operation as well as radiotherapy, chemotherapy and medications for life. That’s brave to me.

I feel like I’m cheating cancer by doing these surgeries, but there’s still the risk of getting a different type of cancer because of this gene mutation. BRCA2 causes pancreatic, prostate and renal cancer as well as melanoma so I’ll still have to remain vigilant. Of course I can’t get prostate cancer, but pancreatic cancer is hard to detect. My dad’s was too far advanced to have any treatment. Pancreatic cancer ravaged his body. He only lasted for 7 months after it was diagnosed. Poor bugger, it was a horrible way to die.

How the Coronavirus Has Impacted Me

Attention has been on my own health issues while the world has been focused on coronavirus. I have found it hard to cope at times because it has restricted my ability to interact with the people who are my confidantes and support system. Talking on the phone is not the same. Even when I was in hospital I could only nominate one visitor for the whole hospital stay. My husband was sent away from the hospital and could only visit for 2 hours once a day. Going through mastectomies will be daunting without him there for my support. The thought of it upsets me a great deal. I won’t be able to have my sons and best friend visit at all.

Elective surgeries were cancelled in March. I feel really lucky that I knew the surgeons personally and my first operation was pulled forward. Any later it would have been impossible. I feel a little guilty that I could get this preferential treatment but there has to be some perks for nursing alongside these doctors for the last 20-30 years.

Other Concerns

Having to tell my brothers and nephews over the phone and Messenger that they too have a 50% chance of inheriting this really sucks. Social distancing sucks when you have to have these very full-on conversations. Worrying that I may get the coronavirus affects my health too, because I have co-morbidities that would mean I’d be one of the cases most likely to end up really sick from it. It’s been a very stressful time, and I’ll be glad when this is all over and we’re out the other side. The world will be a changed place when this pandemic is over.

Beating BRCA2.  While the world has focused on the Coronavirus, I have been beating cancer.  BRCA2 gene mutation increases my risk of breast, ovarian and pancreatic cancer.

Note to my followers: I’ll be out of action for a while due to my surgery this week. I may be able to post short updates via my mobile phone but my usual blog posts will be on hold for a few weeks. Thank you all for your support, I really appreciate it.

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