Kelly’s IBC Story

Kelly’s IBC Story

In November 2019 my periods started playing up: stopping and starting again etc. At that point I noticed a small lump in my left breast.  I put this fully down to being 47 and believed I was peri menopausal. I’d had a mammogram less than 12 months before and had been recalled for further investigation and at that point I was told everything was fine.

I went on an 8-week overseas holiday and came back to my busy life but in March 2020, the lump became much more noticeable, and the skin was also hot.  I saw my GP who sent me for a mammogram and ultrasound, and she also referred me to the hospital surgical team.

The testing came back negative, nothing to worry about, and to retest in 12 months. However, the lump was still there, and the skin was red, itchy and hot so the hospital ordered a biopsy.  My GP called me to say that she had received the radiologist report comparing my recent mammogram to the one from 12 months before.  No change had been identified and my doctor did not recommend the biopsy.
In fact, the biopsy was cancelled, and the clinic refused to re book me.  Over a month went by with me trying to get rebooked.  The lump was growing rapidly and by that point, my breast was a good 2 cup sizes larger than normal.

Fortunately I had a follow up at the hospital and the first question I was asked is why I hadn’t had the biopsy!  Fast forward and within that week, the biopsy was done on 2 large masses in my breast.  I was diagnosed within 2 days, on May 13th 2020, as having grade 3 in situ ductal carcinoma and a grade 3 carcinoma of no special type.  The surgeon said that one of the lumps was 10cm and it had merged with the second 5cm lump.  He wanted to carry out a mastectomy within 30 days.  By then I had researched Inflammatory Breast Cancer and came away from the consult with an uneasy feeling that something was very wrong.
The surgeon said he did not believe it was inflammatory breast cancer and that surgery was the best first option.  He did not refer me to an oncologist for further scans.  He said that could come later.
Luckily, I had found the Facebook page of ‘The IBC Network Foundation’, the USA based sister charity of ‘The IBC Network Foundation Australia’.  I reached out to them and had discussions with two amazing American ladies, Terry and Angela, who both imparted knowledge about IBC and how it should be treated.  Armed with this information, I called the McGrath Breast Cancer nurse and described my symptoms.

I sent her photos of my breast (by now the whole breast was red itchy swollen and hot) and she raised my case at the multi-disciplinary meeting.  The team saw my photos and unanimously agreed I had Inflammatory Breast Cancer. They formed a plan there and then.  I saw the oncologist the next day then underwent an MRI, a PETscan and bone scans.  I started chemotherapy that Friday.  Fortunately, it had not spread any further than “extensive” lymph node involvement.

I am so lucky as following a combination of drugs, all aimed at stopping the growth and strength of the cancer cells, I’ve had a complete response.  Surgery was carried out in December 2020 with a non-skin soaring radical mastectomy plus 20 lymph nodes removed.
The result was, there was no evidence of any remaining cancer!  I then had 5 weeks of daily radiation. I opted to follow the international standard which was stronger radiation. I burnt quite badly but I needed to know I had done all I could to prevent a reoccurrence.  I have since opted for a mastectomy on my “good” side to create symmetry and alleviate the fear of reoccurrence in that breast. I feel so much more confident being flat and it has been a good decision for me.  I’ll soon complete the medication, Herceptin and I take Tamoxifen nightly with minimal side effects.

My life finally resembles my new normal, my plan is to work on myself, my strength and my health and return to work in early 2022.
I have really learned to listen to my body and will never not address concerns again but I’m happy to say I’m feeling better and better!

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.