What To Do If You Are Diagnosed With a BRCA Gene Mutation

What to do if you are diagnosed with a BRCA Gene Mutation

Transcript of Podcast Episode 4

Welcome to the BRCA gene mutation and cancer awareness podcast.  I am Christina Henry of Midlifestylist.com.  I am a Registered Nurse with a BRCA2 gene mutation.  My podcast will raise awareness of BRCA 1 and 2 gene mutations and their link to an increased cancer risk.  BRCA gene mutations affect males and females equally, but there isn’t a lot of awareness in the community of the cancers that male carriers are at risk of.  My podcast aims to change that.  I will also discuss other topics of interest such as genetic counseling and testing, cancer screening and prophylactic surgery.  If you would like to know more about BRCA 1 and 2 gene mutations, this podcast is for you.  Thanks for joining me.

You Just Found Out You Have a BRCA Gene Mutation – what next?

You have had your appointment with the Genetic Counselor, as discussed in the last episode.  After an anxious wait, you are notified, usually by mail but sometimes by phone, that you have a BRCA 1 or 2 gene mutation.  You are probably reeling, and experiencing the full gamut of emotions like shock and grief.

My first thought was for my sons who are aged in their 20s.  Because they have a 50% chance of inheriting it from me, I thought I had given them a death sentence.  If you don’t have children but want them one day, you will be realising that starting your family now has become that much more complicated.

It is important to remember that a diagnosis of BRCA1 or 2 gene mutation does not mean you will definitely get cancer.  It does increase your risk, but other factors need to be considered as well.  Genetic testing tests for one mutation only.  Someone is either positive or negative – that cannot change over time.

Results will be one of the following:

Positive meaning the person carries the gene mutation.

Negative meaning they do not have that particular gene mutation.  It does not rule out mutations in other genes.  Breast and other cancers can still occur because most breast cancers are not hereditary.

Ambiguous or uncertain, meaning that a mutation has been found but it is not known whether that mutation has any affect on the chances of developing breast cancer.

If you are diagnosed positive of a BRCA1 or 2 or PALB2 gene mutation, you have a higher chance of developing breast cancer, and are more likely to develop it at a younger age.  Estimates vary depending on the source.  Women with BRCA1 or 2 mutation can have a 45-65% chance of being diagnosed with breast cancer before age 70.  PALB2 mutations have a 33% chance.

You can reduce your risk by doing the following:

Have regular health checks including examining your breasts monthly including if you are a male.  Early detection of breast cancer is of utmost importance.  A screening plan will be developed by your doctor including more frequent screening starting at a younger age.  You should have regular skin checks as well.  In my case it is six monthly because of the high risk of melanoma in my family.

Regular screening for females includes 6 monthly to yearly mammograms, ultrasounds and MRIs of your breasts.  Males should be screened for prostate cancer as well.

Reducing Your Risk

Your doctor may prescribe risk reducing medications.

An option many females are choosing is risk reduction surgery to remove breasts and ovaries.   Because the chances of developing breast cancer are so high, many women undergo prophylactic surgery to remove the breast tissue before cancer has a chance to develop.  This is called a bilateral prophylactic mastectomy.

Removal of ovaries and Fallopian tubes may also be done because this can reduce breast and ovarian cancer risk.  This procedure is called bilateral salpingo-oophrectomy.  Prophylactic surgeries reduce the risk by about 90% but they can’t eliminate the risk entirely.  Prophylactic surgery has other implications.  It can mean that fertility is affected if the ovaries are removed.

Making Decisions is an Individual Choice

All of these choices should be weighed up before you make any decisions.  Getting advice from medical professionals with experience in genetic risk is important.  It is also an individual choice – what is right for one person may not be right for someone else.  Results can impact many life decisions.  A genetic counselor can help you to look at the implications of your results.

The choices available to you may be limited to what is available in your area.  You may not live near to specialists who will do prophylactic surgery like mastectomies.  There has also been a delay in surgeries because of the pandemic.  Many hospitals are only able to treat patients with cancer at the present time, not high risk patients.  Because of social distancing some screening clinics have been affected in some areas.  This could mean delays which is really frustrating but it’s just one of the effects that the pandemic is having on life as we know it.

My advice is to do your own research.  Read as much information as you can.  Be informed so that when you do see medical specialists you have a good idea of what to ask.  Join support groups as well.  I learn a lot from other people in my position.  Links to support groups can be found on Midlifestylist.com. 

What Influenced My Decisions

Your decisions will be based on your individual circumstances.  For example, ten years ago I wouldn’t have done prophylactic surgeries because I was a single parent and did not have the means to have time off work or pay for the surgeries.  I had just been through some major heart issues so I was not up to going through anything else at the time.  When I was diagnosed with BRCA2 last year my sons were adults, I had a supportive husband and was more financially secure.  I was also in my 50s so I felt the pressure of not wanting to delay it any longer.  I had had nearly every member of my family diagnosed with cancer so the fear of cancer was foremost in my decisions.

The Impact Of A Positive Result on Other Family Members

Getting a positive result can also impact other members of your family.  I talked to my sons about what the implications of my positive result meant for them.  They both want children one day so their decisions around that would be affected if they also tested positive.  I told them that they would need to tell their future partner and that some women might not want to take the risk of having children with the gene mutation.  My sons’ main concern at the time was for me.  And naturally they were anxious about inheriting the gene mutation themselves.

I told my siblings and nephews very shortly after I told my sons.  My siblings have a 50% chance of inheriting BRCA2, and their children had a 25% chance based on my diagnosis.  I have not yet told many of my cousins who have a 25% chance of having the mutation.  This is because the last year has been very difficult for me due to multiple surgeries and a long recovery.  Now that I am past the worst of it I will let them know.  The cousins I have discussed it with so far would rather not know – many of them are head-in-the-sand types.  That is their choice but they also have a right to know so that they can research it and decide for themselves.

If you have recently been diagnosed with a gene mutation you might already have been in contact with a Family Health Centre.  You will probably receive referrals to a breast surgeon and gynaecologist.  You may feel like you are being rushed into making decisions.  Don’t rush your decisions, and get second opinions if you need to.

Worst case scenario and your diagnosis will come as a result of a cancer diagnosis of yourself or a close family member.  My heart goes out to you and it may seem superficial for me to say, but I do know how you feel.  It’s gut wrenching so I wish you all the best for the future.

Further Information

My next episode will focus on melanoma.  Many people, even those with a BRCA 1 or 2 gene mutation, are unaware of the increased risk of melanoma and other cancers.  My son Jordan was diagnosed with a melanoma at age 24.  He will be coming to the studio to talk about melanoma and share some important information that everyone should be aware of.  

For further information about BRCA gene mutation and cancer awareness, go to my website Midlifestylist.com and search BRCA.  You can also read about my personal journey with BRCA2 and prophylactic surgery on the website.  A transcript of this episode is available on the website.  You can contact me via Midlifestylist.com 

Outro

Do you want to learn more about BRCA gene mutations and cancer awareness?  Find me at Midlifestylist.com where you can read about this and living a healthy lifestyle.  Please subscribe to the podcast so that you don’t miss an episode.  If there is a topic you would like me to talk about you can contact me via Midlifestylist.com.  Thank you for listening.  

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How to Be Tested For a BRCA Gene Mutation

Cancer Awareness Ribbons in Multiple Colours

Transcript of Podcast Episode 3

Welcome to the BRCA gene mutation and cancer awareness podcast. I am Christina Henry of Midlifestylist.com. I am a Registered Nurse with a BRCA2 gene mutation. My podcast will raise awareness of BRCA 1 and 2 gene mutations and their link to an increased cancer risk. BRCA gene mutations affect males and females equally, but there isn’t a lot of awareness in the community of the cancers that male carriers are at risk of. My podcast aims to change that. I will also discuss other topics of interest such as genetic counseling and testing, cancer screening and prophylactic surgery. If you would like to know more about BRCA 1 and 2 gene mutations, this podcast is for you. Thanks for joining me.

Welcome to episode 3:  How to be tested for BRCA gene mutation

In the last episode I discussed how I came to be aware of the BRCA2 gene mutation in my family, and how I came to be tested.  I am now going to explain how to have genetic testing if you suspect that you have a genetic mutation in your family.

The first step is to look at your family’s health history.  In particular, ask yourself the following questions:

  • Have any of your blood relatives had cancer?
  • What types of cancer were they?
  • How old were your relatives when they developed cancer?

Are You at High Risk of a BRCA Gene Mutation?

A person is considered high risk of having a BRCA mutation if they have a family history of:

  • Breast cancer diagnosed before the age of 50;
  • Male breast cancer at any age;
  • Multiple relatives on the same side of the family with breast cancer, particularly first degree relatives (mother, sister, daughter);
  • Multiple breast cancers in the same woman, meaning breast cancer developing in both breasts over time or at the same time;
  • Both breast and ovarian cancer in the same woman;
  • A history of ovarian cancer in the woman’s family, especially if a first degree relative;
  • Ashkenazi Jewish heritage (they have a 2.5% chance of inheriting a BRCA mutation compared to 0.25% in the general population).

I have written an article on Midlifestylist.com called Know Your Family and Personal Health History.  I included a free health history form with a family tree so that you can get an idea of how to document your family’s health history.  It is important to look at both the males and the females as a BRCA gene mutation can be passed down through either line.

Genetic Testing at a Family Cancer Clinic

Genetic testing is free in Australia if a genetic mutation has been found in your family.  You will need your relative’s name and where they were tested.  You may have been given a copy of your relative’s results, or a letter from their genetic counsellor saying what genetic mutation they have.

Free genetic testing may be available if there is a strong family history of breast or ovarian cancer.  The genetic counsellor has to estimate that you have at least a 10% – 15% chance of having a faulty BRCA 1 or 2 gene in the family.  A relative that has had breast or ovarian cancer would need to be willing to have genetic testing.

Publicly funded testing is only available through a Family Cancer Clinic in Australia, not via a GP.  Family Cancer Clinics are based throughout Australia and are covered by Medicare.  Your GP will need to refer you to the clinic for Genetic Counselling first.

Referral for genetic testing at the Family Cancer Clinic will depend on whether the Genetic Counsellor assesses you and feels that there is a strong suspicion of a genetic mutation based on your family history. If you elect to pay privately it costs approximately $2000, which is not covered by Medicare or private insurance.

Private Genetic Counselling

Genetic Counsellors are also available privately in some cities.  My Genetic Counsellor is a medical consultant that I saw privately.  It did cost me to see him, but my actual test was free.  He saw my sons privately as well, and tested them free of charge.  I elected to see a private Genetic Counsellor because I had seen him previously and knew him professionally (I am a nurse).

Genetic testing is done via a blood test.  My sons and I had two separate blood tests 15 minutes apart.  The results were available after a few weeks.

Why You Should Avoid Do-It-Yourself Genetic Tests

I have read about do-it-yourself genetic tests available by mail order.  I strongly recommend that you don’t go down this route for a couple of different reasons.  First they may give you a false positive or a false negative.  It’s more likely to be a false positive which could lead to an anxious reaction for nothing.  

Secondly, having the discussion with the genetic counsellor is extremely important.  They are able to explain what your risks are, based on your family history. It is not the same for everyone.  Some families have a high number of prostate cancer cases, but a low number of breast cancer cases.  That is the case in my family.  

The implications of a diagnosis of a BRCA 1 or 2 gene mutation need to be carefully considered before you have testing.  This can only be explained by a medical professional trained in this field.  Please don’t take any shortcuts – I strongly advise you to get a referral to a Genetic Counsellor for these reasons.

Further Information

If you would like to read further about this, I have a link on Midlifestylist to Pink Hope.  They have an Assess Your Risk Tool on their website that can help you to work out whether you need to see a genetic counsellor or not.

I will be talking about what to do if you test positive for a BRCA 1 or 2 gene mutation in my next episode.  For further information about this and cancer awareness, go to my website Midlifestylist.com and search BRCA.  You can also read about my personal journey with BRCA2 and prophylactic surgery on the website.

Thank you for listening.  Please subscribe to the podcast so that you don’t miss an episode.  You can contact me via Midlifestylist.com 

Outro:

Do you want to learn more about BRCA gene mutations and cancer awareness? Find me at Midlifestylist.com where you can read about this and living a healthy lifestyle. Please subscribe to the podcast so that you don’t miss an episode. If there is a topic you would like me to talk about you can contact me via Midlifestylist.com. Thank you for listening.

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Being Diagnosed With a BRCA2 Gene Mutation – My Story

Multiple coloured cancer awareness ribbons

Transcript of Podcast Episode 2

Welcome to the BRCA gene mutation and cancer awareness podcast.  I am Christina Henry of Midlifestylist.com.  I am a Registered Nurse with a BRCA2 gene mutation.  My podcast will raise awareness of BRCA 1 and 2 gene mutations and their link to an increased cancer risk.  BRCA gene mutations affect males and females equally, but there isn’t a lot of awareness in the community of the cancers that male carriers are at risk of.  My podcast aims to change that.  I will also discuss other topics of interest such as genetic counseling and testing, cancer screening and prophylactic surgery.  If you would like to know more about BRCA 1 and 2 gene mutations, this podcast is for you.  Thanks for joining me.

Being diagnosed with a BRCA2 Gene Mutation – My Story

Many of you have found this podcast through a search for BRCA.  You may already follow my blog Midlifestylist.com.  I have written quite a lot about my BRCA journey.  But I haven’t told my story of how I was diagnosed.

I first heard about BRCA over 10 years ago.  Being a nurse, I was aware of families where breast cancer affected multiple generations.  I worked in a surgical ward where breast, ovarian and prostate cancer patients were cared for.

My Cousin Has a BRCA2 Gene Mutation

One of my patients happened to be my first cousin.  We are from a very large family – I have about 52 first cousins, many of whom are much older than me.  This cousin is almost a whole generation older – closer to my parents’ age than mine.  I didn’t know her very well because she grew up in Australia, while I grew up in New Zealand.

This cousin had had a very extensive surgery prophylactically.  She told me about the BRCA gene mutation – she has BRCA2.  Because both her parents had had BRCA2 cancers it was unclear which side of the family the BRCA2 gene mutation came from.  My father’s sister is her mother.  Both her parents were deceased.  Her mother died from ovarian cancer, and her father had had male breast cancer.

My cousin and I had the same breast surgeon.  I had seen him because of some breast lumps that were benign.  He recommended that I see a genetic counselor.  At the time my only direct family that had had cancer was my mother who passed away from metastatic brain cancer, unknown primary.

My First Visit to the Genetic Counselor

After looking at my family history, the genetic counselor advised me that there looked to be no evidence of BRCA2 in my branch of the family tree.  The test for BRCA at that time was very expensive.  I was a single mother of two teenage boys and did not have the means to pay for testing, or for prophylactic surgery for that matter.  I decided to continue regular monitoring which meant yearly mammograms and breast ultrasounds.

Over the next few years more cancer cropped up in my family – two siblings and my son had melanomas, and dad had prostate and pancreatic cancer.  My breasts were high risk anyway because of dense breast tissue and the lumps.  I was always fearful that they were going to diagnose me with breast cancer.

My Second Visit to the Genetic Counselor

Early in 2020 I decided to go back to the genetic counselor because I could never really get it out of my mind.  After revisiting my family tree he said that there was a high probability of me having a BRCA2 gene mutation.  The test was relatively straightforward because they only had to look at the same genetic mutation as my cousin.  It was now covered by Medicare so there was no cost to me.

I was at work when the genetic counselor phoned me with the results.  It was not a surprise to me that I had the genetic mutation.  I think I was in shock because I did not react at all.  He said that my sons would need to be tested as well.

A BRCA2 Positive Result

I was driving home and it hit me – “Oh My God I have given my sons a death sentence”.  Tears started streaming down my face and it was a struggle to drive the rest of the way home.  How am I going to tell my boys?  I had already discussed what I would do with my husband.  Because my risks of breast and ovarian cancer were so high, I knew I would have prophylactic surgery.  I had already booked the appointment with the gynae-oncologist.

I had to tell my sons in person and as soon as possible.  It was one of the hardest things I’ve ever had to do.  Both of them took it really well and were definite in their desire to have the test as well.  We all expected my older son to have the BRCA2 gene mutation as well because he had had a melanoma.

My Third Visit to the Genetic Counselor

We went to the genetic counselor as a family.  My sons had their blood tests straight away.  A few weeks later they each received a letter in the mail and to our surprise, neither of them tested positive.  My older son undoubtedly has a gene for melanoma, but we already have skin checks six monthly so there is no reason to look for the gene responsible.

It is such a huge relief that my sons haven’t inherited the BRCA2 gene mutation from me.  They have had to watch me go through multiple surgeries, their grandfather died of prostate and pancreatic cancer, and now my brother has prostate cancer as well.  It is one glimmer of joy in this journey with BRCA2.

Genetic Counseling and Testing

I feel very grateful that my cousin told me about BRCA2 10 years ago.  I could never relax knowing that there was a chance of me having it as well.  I am really lucky that she happened to have the same breast doctor and genetic counselor as I do.  It made it much easier to get testing done.  Because the BRCA2 gene passed down through the male line in my branch of the family there is not the large incidence of breast or ovarian cancer that would alert the doctors. 

It was only by deciding to go back to the genetic counselor that the genetic mutation was discovered.  Because there have been a lot of advances in research, it is worth being retested if you had a test done some years ago.  Some people who were tested negative back then have now been found to have a genetic mutation.  Talk to your doctor if you are concerned.

In my next episode I will be discussing genetic counseling and testing.  For further information, go to my website Midlifestylist.com and search BRCA.  I will be discussing these topics in greater detail. You can read about my personal journey with BRCA2 and prophylactic surgery on the website.

Thank you for listening.  Please subscribe to the podcast so that you don’t miss an episode.  You can contact me via Midlifestylist.com 

Outro

Do you want to learn more about BRCA gene mutations and cancer awareness?  Find me at Midlifestylist.com where you can read about this and living a healthy lifestyle.  Please subscribe to the podcast so that you don’t miss an episode.  If there is a topic you would like me to talk about you can contact me via Midlifestylist.com.  Thank you for listening.  

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Introducing My New Resource Page and Podcast

A cell phone, diary and cup of coffee

Introducing My New Resource Page and Podcast for BRCA Gene Mutation and Cancer Awareness 

This week I launched my new resource page and podcast for BRCA Gene Mutation and Cancer Awareness.   BRCA 1 and 2 genes mutations increase the risk of several types of cancer in their carriers.  Because I have a BRCA 2 gene mutation I have an interest in this subject.

The resource page contains information about BRCA gene mutations and the cancers we are most at risk of: breast, ovarian, pancreatic, prostate and melanoma.   It covers my own personal journey since being diagnosed in February 2020.  

There are links to good sources of information including websites, books, documentaries and support groups.

My next project will be a podcast about BRCA gene mutations.  I am working on this currently and created a trailer which you can listen to here.  

The resource page and podcast are not only of interest to BRCA gene mutation carriers.  There is also information on regular health checks everyone should do, and being aware of your own risk of cancer and other diseases.

I would love you to take a look and tell me what you think.

https://midlifestylist.com/brca-gene-mutation-and-cancer-awareness/

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Update on Resilience, My Word of the Year

Update on Resilience - My Word of the Year

Improving my Resilience is My Goal for the Year

My word of the year is resilience.  I thought I would update my readers on how my goal of improving my resilience is going.  Resilience means to keep trying despite setbacks, to never give up.  I chose this as my word of the year to inspire me even when I feel like giving up.  

One Year After Being Diagnosed with BRCA2 Genetic Mutation

It is one year since I was diagnosed with BRCA2, a genetic mutation that increases your risk of cancer.  Since I was diagnosed with BRCA2 my life has been altered dramatically.  A year ago I was a productive member of society with a job, and pretty good health.  As soon as I got that diagnosis I knew that I wanted prophylactic surgery.  There was no doubt in my mind.  I have looked after patients with ovarian and breast cancer my entire career and I always had in the back of my mind that I would take any steps to avoid either of them.

What is BRCA2?

Because BRCA2 increases your risk of cancer by so much, and if you do get cancer it’s usually the most aggressive kind, the best treatment is to avoid it.  I had been screening yearly for 10 years leading up to this, and there’s almost a feeling of inevitability about it.  You’re waiting for them to tell you that one of the areas they’ve been watching has become cancerous.  So there was really no decision to make – I was going to have prophylactic surgery.

BRCA2 Mutation Cancer Risk infographic.  For women, the cancer risk is 40-84% of developing breast cancer, 11-27% ovarian cancer and 2-7% pancreatic cancer.  Source: Ovarcome
BRCA2 Mutation Cancer Risk infographic. For women, the cancer risk is 40-84% of developing breast cancer, 11-27% ovarian cancer and 2-7% pancreatic cancer. Source: Ovarcome

I expected both surgeries to go well.  You never consider that there could be complications, the only thing on your mind is getting rid of the offending organs that could give you cancer.  First cab off the rank was my ovaries – a relatively low risk, minimally invasive operation because I had already had a hysterectomy.

Suffering Surgical Complications 

The complication from this relatively small, keyhole operation is rare, but has changed my life.  I went into bladder retention – my bladder was stretched beyond capacity and has not sprung back into shape.  I have an atonic bladder now – it doesn’t work.  It’s probably permanent because the nerves were damaged and the muscle fibres stretched beyond their limits.  Even corrective surgery by a urologist hasn’t made any difference.

There is one positive – because I’m a nurse I can self cathetarise so I don’t need an indwelling catheter.  To be able to pass urine I need to insert a cathetar.  I get really upset about this because at 54 years old, I don’t want to think my bladder is completely stuffed.  But the reality is that it IS stuffed.

More Surgical Complications Post Mastectomies

The complication after the bilateral mastectomies was also rare.  This was another life-changing complication that I’m still dealing with.  I haemorrhaged on the left side post-operatively.  My blood count dropped really low and I needed several blood transfusions and emergency surgery to locate the bleeding area.  The swelling remained for months afterwards.  I needed even more surgery to wash out the cavity and treat  the area for infection.

Lifetime BRCA1 and BRCA2 Cancer Risks for Men.  Many people do not realise that BRCA1 and 2 affects men as well.  Prostate cancer runs in my family with my grandfather, father and brother having it.  Dad also had pancreatic cancer.  Melanoma also runs in my family - brother, sister and son.  Source:  Basser Research Centre for BRCA
Lifetime BRCA1 and BRCA2 Cancer Risks for Men. Many people do not realise that BRCA1 and 2 affects men as well. Prostate cancer runs in my family with my grandfather, father and brother having it. Dad also had pancreatic cancer. Melanoma also runs in my family – brother, sister and son. Source: Basser Research Centre for BRCA

The Physical and Mental Affects of a Prolonged Recovery

My recovery has been prolonged because I wasn’t allowed to do any exercise apart from walking until the swelling subsided.  That meant six months without using my upper body for anything more strenuous than lifting a cup.  When I was finally allowed to do yoga, my muscles went into spasm and I was in severe agony.

I knew that I wouldn’t be able to improve my upper body strength without professional help.  My GP was very understanding and supportive and has much more insight into patients returning to work after injury or surgery.  He referred me to an exercise physiologist to build up my physical strength.  Because I was struggling with the emotional fall-out from all of this, he referred me to a psychologist as well.

Improving Mentally and Physically

It’s approximately 3 months since then.  Emotionally and mentally I’m so much stronger.  My psychologist helps me to look at things from a different point of view, and has given me strategies to deal with the grief and stress.  She doesn’t pat me on the hand and tell me it’s going to be alright.  I need more than that.  I need to work through the emotions that have come up from these surgical complications.

Physically, it’s been a hard slog.  The exercise physiologist can’t increase my exercises too quickly because it can result in severe muscle pain.  I do an hour long program that she gives me, three times a week.  I see her once a week to ensure I’m doing the exercises with the correct technique, and to learn new exercises.

The ultimate goal other than improving my resilience, is to return to work.  My boss has offered to reduce my hours to two shifts a week which will at least enable me to return to my job.  She has been incredibly supportive throughout the whole ordeal.  I couldn’t wish for a better boss.  If I continue to improve at my current rate, I will return to work in April.

Lack of Understanding From My Surgeon

Today I had a post operative visit with my breast surgeon.  There is always a little bit of anxiety leading up to these appointments because I’ve had so many occasions where I felt really upset.  Usually his first question is  “Are you back at work yet?”.  Despite me explaining that my employer won’t let me go back until I am back to 100% capacity and able to do CPR and heavy manual handling, he never understood.   I always felt like he was judging me for it – as if I didn’t want to work.  He even asked me straight out a few times if I wanted to work.  

Not once has he ever taken the blame for what happened to me.  In his opinion, my post-op haemorrhage couldn’t possibly be his fault.  He tried to shift the blame, even sent me to see a haematologist to find out if I had a bleeding disorder.  

Post-operative Complications Can and Do Happen

As a nurse, I know that post-op complications can happen.  When they consent you for any procedure large or small, part of the consent process is to discuss the complications that may happen.  I’ve only seen a haemorrhage after breast surgery once in my career and it was as dramatic as mine.  

I’ve been unlucky to suffer a few complications post surgery previously so I have a better understanding than most people.  That is why I’ve never blamed the haemorrhage on my surgeon.  But the fact that he tries to shift the blame to me has worn thin.  I’m not contemplating getting compensation for this, or suing him, but a lot of people would. 

The Cost of a Prolonged Recovery 

This has cost me a massive amount of money in lost wages and medical expenses and I’m just lucky I had income protection insurance through my superannuation fund.  I don’t live my life with regrets usually but there have been times when I’m really depressed because of the way my life has changed in the last year.  

BRCA and cancer - BRCA1 and 2 increase the risk of cancer for both men and women.  Source: Penn Medicine's Basser Research Centre for BRCA
BRCA and cancer – BRCA1 and 2 increase the risk of cancer for both men and women. Source: Penn Medicine’s Basser Research Centre for BRCA

Even though the last year has been difficult, and my quality of life has changed, I’m still able to be positive about the future.  I wasn’t willing to accept that I would not be able to work again.  At times I have wondered why I try so hard.  Then I count my blessings.  My parents both died of cancer, and it looks like my brother will too (he has advanced prostate cancer).  I have beaten cancer and don’t have that hanging over my head.

Being Resilient and Looking to the Future

Even when things seemed hopeless, I still had the power to change direction.  I wasn’t willing to let fate decide that I would never be well enough to work again.  I sought help.  And I continue to work hard to get back to the person I was, changed in many ways but the old me.  That’s what resilience has meant to me in the last year.

If you would like more information on BRCA genetic mutation and cancer risk, these are the other posts I have written:

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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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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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