(June 19, 2019)
Do you see what I see ?
A revised perspective on Male Breast Cancer
Personally I find the above tag line taken from that famous Hunters and Collectors song emblematic of the challenges facing the MBC community in gaining better awareness, understanding, and outcomes.
My name is Rob Fincher and I’m a 59 year old male who was originally diagnosed with breast cancer in 2010, thanks largely to the astute observations of my wife who noticed my right nipple had become inverted. We had a bit of breast cancer history on both sides of my parents’ families, both nothing within my immediate family. My initial consultation with my family doctor had labelled it a cyst and if I wanted a referral to a surgeon then he would arrange it. Following a range of clinical investigations my doctor confirmed I had invasive ductal carcinoma in my right nipple and some metastases in my lymph nodes. How long had it been there? I don’t know because I never checked and after all it was only women who got breast cancer right.
I underwent a mastectomy and had my lymph nodes removed with the resultant pathology indicating it was a Grade 3 ER+ Cancer that had also travelled to three lymph nodes, but that the surgical margins were very good. The surgery was followed by chemotherapy (TAC) and radiotherapy that resulted in some pretty horrendous burns on my chest. After a period of seven months I returned to my work within the Financial Services industry.
For the following four years I underwent regular six monthly check-ups that were largely physiological in nature (apart from blood tests) with my Specialists and then in July 2014; after some four years of encouraging results, I was diagnosed with secondary breast cancer in my lungs and five spots in my bones. My treatment cycle has consisted of two further chemotherapy cycles over a two year period (Abraxane and Triple M), and changing from Femara to Tamoxifen, and now to Aromasin following the recent identification of more bone mets (now 11 in total…but as they say it’s only a number). In addition I have been having monthly injections of XGEVA (Denosumab) that must be helping as I am experiencing no bone pain.
After the initial “coming to terms” with the prognosis and an initial philosophy of just getting on with life and making the most of what was likely to be around a two year life expectancy, I was chastened by one of daughters who asked if I shouldn’t in fact consider making some lifestyle changes and doing something different.
When I thought about she was right…after all it was Albert Einstein who said “The definition of Insanity is doing the same thing over and over again and expecting different results”. So after some personal soul searching and extensive reading and research I have embarked on a new journey with my amazing wife that is aimed at changing it up and challenging what was “our norm”.
In summary, these are the changes we made to our lifestyle:
- In the interests of trying to reduce inflammation within the body we changed our diet to become primarily Vegan (with the only exception being the inclusion of fish). No diary! No eggs! No animal protein!
- I commenced a regular daily exercise regime focused primarily on walking with an aim of completing at least 10,000 steps every day..thanks fitbit for keeping me on track!
- I retired from work immediately following the second diagnosis and reduced all stresses from my daily life. Having a selection of motorbikes to ride in the garage helps to clear the head.
- I have now decided to reflect on my journey to date, collected my thoughts, and decided to put pen to paper in the hope of improving awareness and helping those men who will no doubt follow behind me.
So now two years on has there been any beneficial impact I hear you ask?
My weight has reduced by over 12kg’s to a fairly healthy 88kg’s, I have significantly improved my aerobic capacity with higher levels of energy, and the somewhat subjective measure of psychological benefit of knowing that I am actively taking steps to improve my outcomes.
Something about what we are doing seems to be working as my latest CA15.3 marker was down to 14, and my most recent CT scan showed lung mets stable and no new mets in any other organ that is encouraging. I know that I am in great hands with my oncologist who I trust implicitly, but I’ve also got to take overall responsibility for my own destiny.
For those interested I personally found the documentary “Forks over Knives” inspirational and books such as “Anti cancer- a new way of life” and the “China Study” both challenging and enriching….we are what we eat, and where there is life there is hope.
In the more recent phases of my journey, and particularly since the new foundations are demonstrating improved outcomes, I have been able to focus my energies to make sure my Emotional Quotient is also being challenged and enriched. The advocacy work I have been focusing on lately with Breast Cancer Network Australia has been hugely rewarding and I am beginning to see important changes take place. For my part I want to ensure the policy makers get a chance to know and experience what I see as someone living through the daily impacts of Male Breast Cancer.
The challenge ahead is to ensure we effectively promote the Male Breast Cancer message and don’t get lost and “drown in a sea of pink”. Being ever mindful of our language when we discuss Breast Cancer, dedicating specific MBC research programs, building a resilient MBC community, and adding some blue would help significantly in an otherwise hugely successful marketing campaign.
We may well be the “less than 1 percenters” but we just want to feel valued and included.
We need to remember Breast Cancer has no gender !!!
I think back to my own personal experience during both my diagnoses and the journey to date. In my mind I replay perplexed conversations I have had with people when trying to explain my condition and the confusion that exists, and also feeling lost and overwhelmed swimming within a sea of pink women paraphernalia knowing that what I was dealing with was very much Same, Same…but different.
I wonder with the benefit of hindsight if it would have been easier to accept the diagnoses, whether it would have been easier to understand and communicate, and whether my feelings of emasculation would have been different if there had been the slightest mention of males or the slightest blue hue anywhere.
When meeting recently with a highly regarded MBC medical professional I was commenting on the fact that for both men and women our sexual identity is an intrinsic part of who we are; and that part of the reason MBC is difficult for people to truly understand is that to my knowledge Breast Cancer is the only cancer that transcends the sexual identity barrier. For me this is nub of where it all begins; where the feelings and emotions pushing to the surface should be collated to help inform the various aspects of our advocacy work. Even-though the medical world is probably technically correct and entrenched around the label Male Breast Cancer, I can’t help but think the naming of these biological remnants (or remnant now in my case post mastectomy !!) gets in the way of improving the initial general public awareness and overall outcomes for this cancer we males have.
However; I am a realist, and recognise that “riding on the coat tails” of the broader Breast Cancer movement focused primarily on women has provided great impetus for research funding, new drugs, cheaper treatments, improved awareness, and overall improved outcomes.
There is also no doubt the recognition, understanding, support, funding, and awareness of Male Breast Cancer is far more advanced in the US than here in Australia. I am particularly impressed with what I have seen from the Male Breast Cancer Coalition and the way it has provided an inclusive male voice that has challenged the stereotypical view of Breast Cancer. MBCC continues to be a guiding light for me in my local advocacy work along with my great mate and fellow MBC advocate and survivor Rod Ritchie.
Together we will ensure that those who follow in our footsteps will not have to endure some of the missteps we have encountered along the way.