My Beautiful Pineapple

by Fiona Edwards

Up until 2014, I had never heard of Inflammatory Breast Cancer (IBC).  That all changed one October evening.  I was on skype to my best friend Marianne when she delivered the news that she had IBC and was gearing up to have a mastectomy. Hot tears filled my eyes and my mind darted to the worst-case scenario. I felt sick.  I couldn’t even start to imagine how she felt.

I first met Marianne at university in Scotland in late 1999 through a mutual friend and we quickly bonded over our love of rugby.  As the years went by and before we knew it, we had become best friends. We had ‘in jokes’, we had songs that were ours and we were there for each other through good and bad. We were even flatmates for a few months in our late 20’s until I made the bold decision to move to Australia to be with my now husband.  The distance between us made no difference as we continued to stay in touch.  We watched rugby together on skype and sent each other small gifts and cards as well as txt messages and emails. When I made trips home to the UK, we made time to see each other and remained very much part of each other’s lives.

About nine months after her initial IBC diagnosis, Marianne had some hope that she was now NED status.

I was on a trip home at the time so we celebrated with a pineapple party (we both had a shared bond over the tropical fruit), we went for walks in the Scottish highlands and enjoyed a couple of shopping trips. We lived for the moment and just enjoyed spending time together making happy memories.

The following year during my next trip it was a different story. By this point cancer had returned to Marianne’s body; it was stage 4. During a visit I asked her the blunt questions and she answered every one of them with positivity. After three days together I hugged her tight and said, “you better be here when I come home next year”.  She looked me in the eye “I’ll be here” she smiled. We hugged again and I drove off. It was the last time I saw my best friend; she passed away 6 months later in January 2017. She was 36.

It’s now been nearly three years since Marianne died. She was one of the closest people in my life and losing her has left quite a void. However, I believe in living your life to its full potential. You only get one chance and every cloud no matter how dark, must have a silver lining. The lining in this dark cloud for me is my involvement in The IBC Network Foundation Australia. I want to do my bit in educating the country (and beyond) as well as helping prevent others from losing their loved ones and the hurt and loss that goes with it. 

Being a part of the organisation has given me the spark I’ve been missing for a while and meeting so many people affected by IBC at the charity launch in Melbourne has helped drive me to step out my comfort zone and do whatever I can to help. 

Marianne will always be a part of me and fundraising for The IBC Network Foundation Australia, in my view, is the best and most fitting way I can honour her memory. 

Men Can Get IBC Too – Rod, QLD

IBC is not a common diagnosis for women, but almost unheard of in men. Five years ago, after feeling a lump, I was diagnosed with Invasive Ductal Carcinoma with dermal lymphatic invasion, Stage IIIB, Grade 2, ER+/PR+, HER2-, and referred to a breast surgeon. On examining my inflamed and enlarged left breast, with its inverted nipple, the surgeon determined an IBC diagnosis and an inability to operated on the left breast in that condition. She sent me to the oncologist to start neo-adjuvant treatment, where chemo precedes surgery.

The oncologist was keen to get my chemotherapy started immediately. Chemo lasted 18 weeks, and was one day each three weeks. There were three lots of FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. I have to say, that chemo went very well for me and I tolerated the drugs without the various dreaded side effects.

The Surgery that followed was extensive, since 2/23 lymph nodes tested positive, all those under my arm were removed along with the breast tissue. Pathology following surgery showed the tumors to be still active, so pCR was not achieved. I was lucky to have a very skillful surgeon, and she was amused when I asked if there was any reconstruction? While it is possible to rebuild a facsimile of a guy’s breast, she explained, the lack of extra material makes it harder and actually inhibits the surgeon who really has to work hard to round up the affected tissue, since cancer often travels further in male breasts.

Following chemo, I started 25 radiation treatments, five a week for five weeks. Again, this was more of an inconvenience than a bad experience, and I understood that this treatment was “insurance” in that it was aimed at rounding up cancer cells in my skin and in the chest wall.

I have been taking the hormone blocker Tamoxifen for the past five years, with little apparent side effects. Three years ago I has diagnosed with prostate cancer and the treatment, much simpler than for breast cancer, consisted of a robotic prostatectomy.

I have tested positive for the BRCA1 mutation, but the result was a variation of unknown significance. Breast cancer and prostate cancer often go together in men, like breast and ovarian cancer in women.

I’ve been fortunate to have my patient advocacy efforts recognized and last year was invited to the Project LEAD course in San Diego. In December this year I gained a patient advocate scholarship to attend SABCS, the world’s premier breast cancer conference, in San Antonio.

I’ve yet to meet a man with an IBC diagnosis, and figure that, since it’s a clinical diagnosis, and since men are very often misdiagnosed anyway, it’s likely more men have this type of breast cancer but it’s unrecorded. I’m certainly grateful that I received such timely and appropriate treatment. As my oncologist once quipped, we threw the kitchen sink at it.