To Google or not after a diagnosis

The day I was diagnosed with Breast Cancer, Friday 18th December 2015 was a bleak, grey, gloomy day, in every sense. We left home at 5.45 am to avoid the school and Christmas traffic congestion, we drove the entire journey in a virtual silence.  Silence really is not always golden and can be full of fear, it was that day.

There was so much to take in, words you recognise and know but don’t really understand. Details of what was said were written down, by good friends who had come with us to be ‘present’ when I would zone out or lose my concentration.  The Consultant was kind but I was devastated to hear him confirm that a certain mastectomy would have to wait 6 months, neoadjuvant chemo would be administered first.  I didn’t understand, inside I was screaming ‘just take it out’ , I really thought I had misinterpreted this when my GP had phoned me at work two days earlier to give me a ‘heads up’.  I still don’t understand why my GP thought ringing me at work was the best way for me to hear about and assimilate my late stage Breast Cancer diagnosis, my need for mastectomy and treatment options – for the record – it wasn’t.

The team of breast nurses were the people who got me through the days and weeks that followed.  They were available throughout Christmas and New Year and returned phone calls.  A small number of close friends, made privy to my worst fears, will forever be in my debt too.  Their resilience, kindness, empathy and humour pulled me along.  My immediate family probably had the most difficult time – to both of my adult sons and husband – thank you, we have made it to 2019 and  Christmas number three was wonderful.

On day of diagnosis I was asked not to Google anything when I got home. It would only “make things worse”, “too much information”, “too confusing” , “particularly those American Breast Cancer websites” – I nodded in agreement, determined to do whatever I could to be a good patient.  Well, that lasted for all of 2 days 😉I work in education, I have an enquiring mind.  I enjoy a little, light research and I love a challenge.  With the rise in Patient Advocacy there is much written about Breast Cancer in an easy to follow format.  I want to share some of the reasons why I am glad I Googled following my diagnosis.

I learned a great deal about my particular type of Breast Cancer, Invasive Lobular Breast Cancer. It’s a much understudied subtype with very unique characteristics.  I am still learning, everyday, thanks to an amazing group of scientists, researchers, oncology experts and patient advocates collectively known as the Lobular Breast Cancer Alliance http://www.lobularbreastcancer.org thank you so much for all you do for patients like me. #Lobmob.

I learned about Breast Density, a topic I now blog about on http://www.beingdense.com more on this later.

I learned what questions to ask prior to Chemo, surgery and radiotherapy.  I learned about Grade and Stage, mitotic scores, about Portacaths and picc lines – Ports for the win – by the way, don’t be afraid to insist on a Port – I asked an Oncologist for a Port but was fobbed off!  The veins in my good arm collapsed after Chemo no. 3 but that’s for another day!

I learned it’s ok to ask for a second opinion.  As a patient it is ok to question, I would recommend you do – we really need to question in order to understand.  Most consultants and Drs welcome your questions. It’s also ok to be afraid and angry.  I tried to harness the anger and use my energy to educate myself more about Breast Cancer, in order to deal with what was coming.

susan-jeffers-quote-pushing-through-fear-is-less-frightening-than-livi

About 2 months after my diagnosis I decided to share some of what I had learned about a little-known Breast Cancer risk called Breast Density.  http://www.Beingdense.com has grown steadily since it began in 2016.  It was inspired by the truely wonderful and admirable patient advocate Nancy Cappello who began the grassroots Breast Density advocacy in America.  Nancy passed away  very recently, I miss her on-line presence greatly, the friendship and support she showed to me personally was absolutely outstanding. Rest in Peace.

textgram_1546361633.png

Through Beingdense I have had the opportunity to engage with a diverse group of wonderful people.  We share information on all aspects of #LifeAfter a Breast Cancer diagnosis.  #PatientEngagement for the win – as said to me recently!

In 2017 http://www.Beingdense.com tweeted for the first time @breastdense.  Please join the 1,200++ following we now have and keep up with @breastdense on Twitter

I hope that there are women and men reading this and that they will share it with all the women they love and care for.  If I had been the ‘good patient’ I aspired to being on the 18th December 2015 http://www.Beingdense.com wouldn’t exist.

Breast Density is a real risk factor.  Women in Ireland deserve to know and if you choose to participate in organised breast cancer screening, there is no excuse not to because – it lights up and shines bright on your Mammogram.  Unfortunately BreastCheck refuse to inform women about Dense Breast tissue which is capable of hiding a tumour. ABSURD but TRUE.

textgram_1529876400

A traditional 2D Mammogram is not reliable enough in Breast Density and reported to miss 50% of cancers in women with very Dense tissue. Please consider making a request for breast ultrasound or MRI.

3D mammography (Tomosynthesis) is an excellent option for imaging in women with Dense Breasts.  We now have several Breast Screening Clinics in Ireland offering 3D mammograms.

This type of screening is not available through the National BreastCheck screening program – they probably won’t tell you though – just like they won’t tell you about your Breast Density.

Help us change this in 2019.

Thank you and Happy New Year.

 

 

 

 

 

 


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s