How to Perform a Breast Self Examination (and why)

How to Perform a Breast Self Examination (And Why)

The statistics on breast cancer are troubling. Even with all the research and new treatments available, there are still 55 new breast cancer diagnoses daily. The most important detection for early breast cancer is regular breast self examination. This post will inform you of how to perform a breast self examination correctly, and other important facts to be aware of.

Early Detection of Breast Cancer Leads to Higher Survival Rates

If breast (and other cancers) are detected early, they have a much higher survival rate. Options for treatment are numerous. At present the five year survival rate for breast cancer is 91% in Australia, and 96% if the cancer is caught early. That is an excellent outcome, but there are still over 5000 deaths yearly. A free breast screening program is available in Australia, but performing breast self examination is still the best way to detect early cancer. It is important to note that males can get breast cancer too, albeit at a much lower percentage than women.

Breast Cancer Statistics in Australia.  Breast cancer is the most commonly diagnosed cancer, affecting 1 in 7 women and 1 in 675 men.  Source:  National Breast Cancer Foundation
Australian Breast Cancer Statistics. Credit: National Breast Cancer Foundation

How to Perform a Breast Self Examination

If breast cancer is caught early there is a very high chance of survival. A monthly breast self examination is the best way to detect early breast cancer because every woman’s breasts are different. If you know how your breasts usually look and feel, you will be in the best position to identify early changes and seek medical attention. Some breast changes are very subtle so it is important to know what to look for. The most important thing is to check your breasts monthly. Some guides say to do it on the first of every month, and some say after your monthly period ends. Post menopausal women should do theirs on the first of the month.

I have seen a number of ways to perform breast self examination. I have always done mine in the shower with soapy, slippery skin. Some women prefer to do theirs lying down. What matters the most is that you check all parts of your breast including up to your collar bone and under the armpit. Here is an excellent video which shows very clearly the correct procedure:

Breast Self Examination. Credit Madras Institute of Orthopaedics and Traumatology, India

Signs and Symptoms to Watch For During Your

Breast Self Examination

The signs and symptoms to watch for are:

  • Changes in the size or shape of your breast
  • Dimpling or a ‘pulling’ of skin on your breast
  • Any new lumps in the breast or under your arm
  • Breast pain or swelling (pain is rare)
  • Discharge of fluid (except breast milk) from the nipple, including blood
  • Dry, flaky red skin around the nipple area

If any of these symptoms are found, make an appointment to see your General Practitioner as soon as possible. Some women have no symptoms and the cancer is found during a routine mammogram or physical examination by a doctor. Mammograms should be done two yearly between the ages of 50 to 74. Breast Screen Australia provides a free screening service for women aged 50 to 74. Free screening is also available for women aged 40 to 49 and over 74, if requested. It is recommended that women with a strong history of breast or ovarian cancer are screened from an earlier age.

If symptoms are found, further testing may be required including ultrasound, biopsy and other scans such as a CT Scan or MRI. Treatments depend on the size and type of tumour, whether it has spread, and your general health.

Signs and Symptoms of Breast Cancer:  changes in the size or shape of your breast, dimpling or pulling of skin on your breast, any new lumps in the breast or under your arm, breast pain or swelling, discharge of fluid (except breast milk) from the nipple, including blood and dry, flaky red skin around the nipple area.  Source: ICON Cancer Centre
Signs and Symptoms of Breast Cancer. Credit: ICON Cancer Centre

Preventing Breast Cancer

Some factors that increase your risk of breast cancer include:

  • increasing age,
  • family history,
  • inheritance of mutations in the genes BRCA1, BRCA2 and CHEK2
  • Exposure to female hormones (natural and administered)
  • a previous breast cancer diagnosis
  • a past history of certain non-cancerous breast conditions

While you can’t do much about your genetic history, there are lifestyle factors that can impact your chances of getting breast cancer. These include:

  • being overweight
  • not enough physical activity
  • drinking alcohol
  • exposure to radiation

Know Your Breast Cancer Risk

I have written about my own diagnosis of BRCA2 gene mutation, which lead to my bilateral prophylactic mastectomies. It is important to know your risk because the presence of a gene mutation or family history of breast and ovarian cancers, could dramatically increase your risk. My risk before surgery was 60-80% as opposed to the general female population of around 13%. The only effective way I could guarantee that I would not get breast cancer was to have my breast tissue removed. It was a “no brainer” for me – the type of cancer that people with BRCA2 get is often the worst type with a very low survival rate. I did not even want to take that risk.

It has been a life changing decision for me because I had complications – I haemorrhaged post operatively. I’m still recovering 5 months later and have not been able to return to work. It may seem strange to say that I still don’t regret that decision.

I found out this past weekend that my brother has Stage 4 Prostate Cancer, undoubtedly from BRCA2. My mother-in-law has terminal lung cancer and only has a few weeks to live. The high incidence of cancer in my family gives me a lot of anxiety around it. Mum passed away at my age from cancer, and dad died from pancreatic and prostate cancer (BRCA2). My son had a melanoma at 24, and two of my siblings also had melanomas. Some families seem to cop a large burden, and ours is one of them.

Don’t Ignore Symptoms

One of the messages I want to convey is never to ignore symptoms. I have written about this previously in Signs You Need to See a Doctor. Be an advocate for your own health because without it daily life is so much harder.

Please share this article – it may help someone you care for. If you enjoyed this you may like my previous post October is For Breast Cancer Awareness which lists my previous posts about my BRCA2 diagnosis and surgeries.

Note: This post is for general informational and education purposes only. Please refer to my disclaimer.

Shared on Denyse Whelan Blogs Life This Week Linkup

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October is Breast Cancer Awareness Month

October is for Breast Cancer Awareness

October is Breast Cancer Awareness month.  I will be featuring breast cancer awareness in my blogs, as well as hereditary cancer.  My focus on cancer awareness this month is due to a passion for health promotion.  I can speak from experience because I have been a Registered Nurse for 30 years as well as having diagnostic tests and multiple surgeries.  

If you have been following Midlifestylist.com you may be aware that I have BRCA2 gene mutation which increases my risk of breast and other cancers.  Both my parents died of cancer – mum was my age, 54.  My father had BRCA2 as well.  He had prostate cancer and pancreatic cancer, and passed away when he was 84.  His father also died of prostate cancer and his sister died of ovarian cancer.  My son and two siblings had melanoma.   Cancer has therefore impacted my life dramatically. 

This year I had prophylactic surgeries to remove my ovaries and breasts.  That is because my chance of getting cancer was so high.  Unfortunately I had complications from both operations and required 3 extra operations.   I’m still recovering and have not been able to return to work since May.

Raising awareness of breast cancer and BRCA2

I can use my blog as an avenue of passing on my knowledge and experience of the impact of cancer and hereditary cancer risk.  Raising awareness will hopefully spare other families from seeing one of their loved ones suffer from cancer.

My previous blog posts about BRCA2 and cancer are:

The first of every month is the day women should perform a breast self examination.  My next post in this series will show you the correct way to perform the breast self examination, and what symptoms to look for.  

Shared on Life This Week Linkup by Denyse Whelan

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Know Your Family and Personal Health History

Know Your Family and Personal Medical History

This post is for general informational and educational purposes only. Please refer to the Disclaimer. It is recommended that you seek advice from your medical practitioner if you require specific medical advice.

Knowing Your Medical History is Essential

It is important to keep a track of your health history, especially your family’s history of diseases and other health issues. Your family’s medical history can reveal a pattern of certain diseases which may indicate whether there is a familial risk for developing a medical condition. Common diseases that can crop up in families are:

  • Cancer
  • Cardiovascular disease – heart disease, high blood pressure, strokes
  • Kidney disorders
  • Diabetes and other endocrine diseases
  • Asthma
  • Genetic disorders such as haemophilia and Down syndrome
  • Some types of mental illness
  • Osteoporosis
  • Huntingtons disease
  • Cystic fibrosis
  • Albinism

Some diseases are caused by mutations in a gene, while others are caused by a combination of genetic and environmental factors such as diet, exposure to toxins, skin damage by exposure to UV light, and substance abuse. Further information is available from Health Direct at this link.

It is important to know your family's health history because it may show an inherited disease.  This post includes a printable medical history form to record your personal and family health.
It is important to know your family’s health history because it may show an inherited disease. This post includes a printable medical history form to record your personal and family health.

My Own Family Medical History

A few weeks ago I was interviewed by Sue Loncaric for her series Women Living Well Over 50. One of the subjects we discussed was the importance of knowing your family and personal medical history. I shared my own family history of cancer, and how it lead me to have genetic testing to diagnose me with BRCA2 gene mutation which puts me in a high risk for certain cancers.

My family also has a high risk of cardiovascular disease and I have a congenital heart defect which was inherited from my father. Knowing my risk meant that I could have increased surveillance and appropriate treatment at an earlier stage, before I developed cancer or cardiac issues.

Knowing your family history can guide your doctor to investigate and treat you for medical conditions in their early stages or even prevent them before they occur. For example, because I have BRCA2 I had my ovaries and breasts removed before I developed cancer. I also started on cholesterol reducing medications before I developed plaque which could have lead to blocked arteries (arteriosclerosis).

My family has a high risk for melanoma so I have taken my sons for yearly skin checks since they were young. My son developed a melanoma at 24, but it was diagnosed at stage 1 and he is now cured. This is due to the regular check-ups and knowing our family history. We both now have 6 monthly skin checks.

Knowing your family health history is important because it could highlight hereditary medical conditions or risk of disease. It can guide doctors to investigate symptoms further and even guide them towards choosing one form of treatment over another. Drawing up a family tree may help to pinpoint certain diseases in the family. Using my own family as an example, your family tree may look like this:

Example of a family tree showing important health history.  BRCA2 gene mutation has been passed down to two generations.  It has an increased risk of breast, ovarian, pancreatic and prostate cancer and may also cause an increased risk of melanoma and other cancersMy Family Tree showing Our Health History

Keeping track of your personal health history is also important. I write everything down and update my records to keep a track of medications, allergies, illnesses and operations, vaccinations and the contact details of the medical practitioners who treat me.

The file is updated regularly and I carry a copy in my handbag in the event of a medical emergency. I cannot count the number of times I have had to refer to it. Keeping track of allergies, immunisations, medications and what procedures you have had done, is easy with this Personal and Medical Family History form.

Personal and Family Medical History

I have developed a useful printable personal and family medical history form that you may use. Print a separate copy for each member of the family and keep it somewhere safe. There is a printable version at the end of the post:

PERSONAL AND FAMILY HEALTH HISTORY 

Personal Medical Information

Name 


Date of Birth 

Place Born


Address



Next of Kin

Name


Contact No. Or Address


Medicare No.


Medical Insurance Policy: 

Provider:                        Card/Policy No.


Concessions


Social Security/DVA No.


Allergies 

MedicationReactionSeverity

Vaccinations

VaccinationDateVaccinationDate

Medical Conditions 

Medical ConditionDate Diagnosed

Surgical Procedures 

DateProcedureDoctorHospital

Medications

MedicationDoseFrequencyPurpose

Major Illnesses

IllnessDateDoctor

General Practitioner 

Name


Address


Phone


Medical Specialist

Name


Address


Phone


Surgical Specialist 

Name


Address


Phone


Medical Specialist 

Name


Address


Phone


Surgical Specialist 

Name


Address


Phone



Additional Notes









Family Medical History

Father 

Medical conditions 


If deceased – Age & Cause


Mother

Medical conditions 


If deceased – Age & cause


Children

Medical conditions 


If deceased  – Age & Cause


Brothers/Sisters

Medical Conditions 


If deceased – Age & Cause 


Grandparents

Paternal Grandfather – Medical Conditions 


If deceased  – Age & Cause


Paternal Grandmother – Medical Conditions 


If deceased  – Age & Cause 


Maternal Grandfather  – Medical Conditions 


If deceased  – Age & Cause 


Maternal Grandmother  – Medical Conditions 


If deceased  – Age & Cause 


Aunts/Uncles

Significant Medical Conditions


If deceased  – Age & Cause

Write significant hereditary medical conditions on this family tree

Printable Family and Personal Medical History Form

Download and print as many copies as you like. You will need one for each member of the family.

If you enjoyed this article, you may also like to read:

Signs You Need to See a Doctor

Being a Patient in the Midst of a Pandemic

Beating BRCA2 – How it Has Affected my Life

Please share this article as it may help someone else.

2 thoughts on “Know Your Family and Personal Medical History”

  1. katey26 says: July 29, 2020 at 10:03 am Edit The form is a great idea Like Reply
    1. Christina Henry says: July 29, 2020 at 7:23 pm Edit Thankyou Katey. I’m glad you like it Liked by 1 person Reply
  2. Jo says: July 29, 2020 at 10:06 am Edit This is a fabulous resource Christine. Two of my grandparents were heavy smokers and died of lung cancer (paternal grandfather and maternal grandmother – at 94), my maternal grandfather passed from complications of a routine operation and my paternal grandmother died of old age (at 98). My mother (78) is as healthy and fit as a horse, but my father (82) has had prostate cancer, non TB lung disease and asthma. Number 6 in 8 kids he lost his eldest brother at 92, but all others are living. All of Mum’s siblings are still living. My husband, however, was adopted and we know nothing at all of his family history. You have definitely got me thinking. #MLSTL Liked by 1 person Reply
    1. Christina Henry says: July 29, 2020 at 7:28 pm Edit Hi Jo, somehow I think you will have a long life! It must be difficult for your husband at times, not knowing his family history. I had my DNA tested through Ancestry.com and found a new first cousin who was adopted. That’s one way your husband could find family if he ever wanted to know. Regards Christina Liked by 1 person Reply
      1. Jo says: July 31, 2020 at 7:56 am Edit Yes, we’ve done the DNA testing, but the closest matches we got were 3rd/4th cousins. We’ve also now got a birth certificate so the next step is to see if we can getthe records unlocked (Scotland). Liked by 1 person
      2. Christina Henry says: July 31, 2020 at 12:31 pm Edit Oh wow! Good luck with it. Liked by 1 person
  3. leannelc says: July 29, 2020 at 7:38 pm Edit Hi Christine – I take my family’s medical history for granted and keep forgetting about the diseases etc that took some of them early. My father died in his early 70’s but that was largely from poor lifestyle choices, however you’ve reminded me of the heart issues in my mother’s side of the family that I need to keep in mind as I get older. I’m grateful that overall we’re a pretty healthy bunch.
    #MLSTL Liked by you Reply
    1. midlifestylist says: July 30, 2020 at 2:45 pm Edit Hi Leanne, I unfortunately inherited some dodgy genes from my dad, so I envy you having a healthy family. Luckily all the creativity we inherited came from my parents so you take the good with the bad. Some people prefer to put their head in the sand with health issues but I think it’s better to keep family history in mind and get on to it quickly if anything worries you. Thank you for commenting, regards Christina Like Reply
  4. Debbie says: July 29, 2020 at 9:29 pm Edit Hi Christina, this is a wonderful resource and your reasons behind it are really informative. Thanks for sharing your thoughts and ideas with us. We are looking at issues with my grandson and family backgrounds are proving required information. Very timely to read your post #mlstl Liked by you Reply
    1. midlifestylist says: July 30, 2020 at 2:47 pm Edit Hi Debbie, I’m so glad you found it useful. I really hope it helps with your grandson. Thank you so much for your feedback, regards Christina Liked by 1 person Reply
  5. Helen says: July 30, 2020 at 12:34 am Edit This is so important! I come from a family that does not talk about family illnesses and It too a long time to draw the information out! It also helped remove some of the shame I was feeling when I realized that some of my medical conditions were not my fault, but actually due to family history. Like Reply
    1. midlifestylist says: July 30, 2020 at 2:38 pm Edit Hi Helen, yes I agree. The time for sweeping things under a rug is long gone. I still have family who choose to put their head in the sand where it comes to their health and I definitely disagree with that approach. It’s better to avoid illnesses or treat them in the early stages. Thank you so much for commenting, regards Christina Like Reply
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Women of Courage Guest Post

Some time ago I was asked by Denyse Whelan to write a guest post for her Women of Courage series. I’ve been following her series every week and have been inspired by all the other guests so it was an honour to be included. Denyse is someone I admire because she has had her own battles with cancer. I look after people going through this type of cancer after they have surgery and it’s a huge deal – head and neck cancer is incredibly challenging but Denyse survived this and has gone on to write very inspirational blogs about this and many other subjects.

Since I wrote this guest post, I have had four surgeries – two planned and two unplanned. I had the surgeries with the intention of removing the organs that were targets for cancer – my ovaries and breasts. I have BRCA2 gene mutation which gives me a very high chance of breast, ovarian, and pancreatic cancer, and melanoma. Previous posts were written about it here, and about my surgeries here.

The link to my guest post on Denyse’s blog is here. Please read it and some of Denyse’s other blogs. I thoroughly enjoyed participating in this guest post for the Women of Courage Series.

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We Went PINK for Breast Cancer Research

As an update to my last blog, I am raising money for breast cancer research by taking part in the GO PINK campaign for the National Breast Cancer Foundation of Australia. GO PINK encourages people to dye or shave their hair, wear pink or hold events in order to raise awareness and funds for breast cancer research.

The National Breast Cancer Foundation

“National Breast Cancer Foundation (NBCF) is Australia’s leading national body funding game-changing breast cancer research with money raised entirely by the Australian public. We receive no government funding. What we do, would not be possible without the support and generosity of people and organisations like YOU. Our mission is simple: stop deaths from breast cancer. How? By identifying, funding and championing world-class research – research that will help us detect tumours earlier, improve treatment outcomes, and ultimately – save lives. Since NBCF’s inception in 1994, the five-year survival rates for breast cancer has increased from 76% to 91%. It’s proof our strategy is working. More than ever, NBCF is focusing keenly on how we can do more with less in order to achieve great outcomes that will impact the longevity and quality of life for patients with breast cancer.  For us, this means identifying new and effective models of funding and ensuring that we don’t stand alone but work collaboratively and creatively to achieve our mission of zero deaths from breast cancer by 2030.” Source: https://fundraise.nbcf.org.au/event/go-pink/why-we-need-you

Our team, The Tough Titties

My niece Ally, her friend Coralee, and I are the Tough Titties! Our dye day was on Friday. We went live on Instagram, so that our followers could watch us dye our hair pink. During the live feed we explained why raising money for breast cancer research is so important to us. We have raised $754 so far – our aim is $1000. If you would like to donate, here is a link to our fundraising page:

https://fundraise.nbcf.org.au/fundraisers/thetoughtitties

As promised, I am posting photos of our big day!

Breast Cancer Research

I have written about why I am raising money for breast cancer research in this blog post. I am passionate about raising money for research into breast and other cancers, particularly cancers that have a genetic link. Unfortunately I have the BRCA2 gene mutation that increases my risk of breast cancer to 60-80% and ovarian cancer to 20-40%, as well as other cancers as I have outlined previously. Both my parents died of cancer and my son, brother and sister have all had a melanoma. Ally’s grandmother also passed away from cancer before she was born, and her other grandmother (my mother-in-law) is suffering from lung cancer. In our family alone, cancer has had a huge impact.

Update on my Bilateral Prophylactic Mastectomies

I am recovering at home after my bilateral prophylactic mastectomies that I had done on 13 May 2020. (Read about it in this post). Recovery hasn’t been as straightforward as I would have liked due to complications after my surgery. My wound is healing slowly and I still have a lot of swelling and bruising. I’m seeing a haematologist now, to try to uncover why I had a large post-operative bleed. Even with all the complications I have had and how much this has impacted my life, I do not regret having surgery to remove my ovaries and breasts. With my high risk of cancer, I could be going through these surgeries with cancer which would have been so much worse.

Doing something positive like raising money for breast cancer research has given me something to do other than feel sorry for myself. I’m not saying I haven’t had days where I’ve been very emotional. I’ve had some days where I’ve been very upset. But having something to focus on has been really positive and helped me to focus on something during this time. I’ve also had some really great support in the way of lovely messages and kind words. That’s the sort of impetus I need to get me through.

Having our dye day was so much fun, especially with Banjo as our mascot. Here is a collage of photos from our photo shoot with him, which was hilarious!

We went pink for the GO PINK campaign to raise money for breast cancer research
Banjo our mascot – photo shoot for the GO PINK campaign.
GO PINK raises funds for breast cancer research. It is organised by the National Breast Cancer Foundation
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I will GO PINK for Cancer Research

GO PINK for Cancer Research

I do some strange things while scrolling through my phone at night. My insomnia keeps me awake for hours sometimes with only my screen for company. I wake up the next day with buyer’s remorse, usually because I’ve bought shoes or clothes that never fit me, or an appliance that never gets used. But this time I woke up with a sinking feeling in my gut because I had signed up to GO PINK, and agreed to dye my hair pink for breast cancer research.

I’m pretty conservative and have never dyed my hair any shade that could be considered flamboyant or radical. As an introvert I hate to stand out in a crowd. The thought of it makes me blush so I’ll probably end up looking like a flamingo with cheeks to match my hair. I needed some courage and that came in the form of my beautiful niece Ally who LOVES to stand out in a crowd and possesses such a lively spirit that she’ll boost my confidence when I need it the most. Ally has been a wonderful support to me over the last few months. She was the person I turned to when I knew I was having my mastectomies because she’s been through breast surgeries herself. Having someone to talk to who has been through this has been a blessing.

My Niece Ally and I.  We will be fundraising together for the GO PINK for cancer research event.  Ally has been a wonderful support for me
My niece Ally and I. We will be fundraising together for the GO PINK for cancer research event. She’s been a wonderful support to me over the last few months

Why Breast Cancer Research is Important to Me

I’m doing this challenge because it’s to fundraise for a cause that is very special to me. I have written about my genetic disorder BRCA2 which increases my risk of breast, ovarian, pancreatic and prostate cancers and melanoma. I inherited it from dad who died from prostate and pancreatic cancer (both caused by BRCA2). I’m at home recovering from bilateral prophylactic mastectomies. It is a risk reducing surgery along with the removal of my ovaries which I had done in March.

The very fact that I could have risk reducing surgeries is entirely due to the discovery of BRCA2 in the mid 1990’s. Before that, entire families were devastated by breast and ovarian cancer striking again and again through multiple generations. It’s now commonplace for family members to be tested for genetic conditions when there appears to be a genetic link. Discovering this gene mutation in 1995 was a game-changer for breast cancer research.  It allowed people like me to discover their inherited risk for cancer and do something about it.  Increased screening, prophylactic surgery and medications to reduce the risk are all possible now thanks to breast cancer research.

My Family History of Cancer and BRCA2 Gene Mutation

In my case there were few cases of breast cancer in my family. That alone prevented me from being tested ten years ago. It’s not as well known that men can have the genetic mutation too. Prostate cancer and melanoma have cropped up in our family through multiple generations, including my 24 year old son who had a melanoma. My cousin was diagnosed with BRCA2 about 10 years ago. Because of that I could be tested for free. The cost used to be extremely high. Improved testing methods mean that more people can now be tested under Medicare. My sons and any other close relatives are also eligible for free testing.

I am passionate about research into genetic causes for cancer and other diseases. I signed up to the GO PINK campaign because it raises funds for breast cancer research by the National Breast Cancer Foundation. If dying my hair pink raises awareness and funds, then I’ll do it. Even though I’m feeling anxious about looking weird with pink hair! The big day is this Friday. If you would like to donate to this cause via our team The Tough Titties the link is below. (The name is Ally’s idea, because people who have cancer have to be tough).

https://fundraise.nbcf.org.au/fundraisers/thetoughtitties

https://fundraise.nbcf.org.au/fundraisers/thetoughtitties

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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.

My son's melanoma.  He was only 24 years old when it was diagnosed.  It was a stage 1 melanoma.  Surgery completely cured him
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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