Breast cancer does not discriminate

I was diagnosed with HR+HER2- breast cancer in July 2018 at the age of 40. I underwent chemotherapy and radiotherapy, had a bilateral mastectomy and bilateral breast reconstruction, and am now on hormone therapy.

In the months prior to my diagnosis I would sometimes feel a twinge in my left breast but I always put it down to ‘that time of the month’. However, one morning when I felt a twinge, I brushed my hand over the side of my breast and felt a very prominent lump. I made an appointment with my GP who sent me for a mammogram and an ultrasound before referring me to a breast surgeon. A biopsy confirmed my diagnosis. I had breast cancer.

I am a fiercely independent person, but as someone who is profoundly Deaf and legally blind this brought some extra challenges. I am able to lipread and although I am fluent in Auslan (Australian Sign Language), I chose not to have Auslan interpreters at my appointments. While Auslan interpreters are a wonderful tool for many deaf people, there is a huge demand and with many of my medical appointments scheduled with very short notice interpreters were hard to book.

I faced many challenges with communication throughout my treatment. Even though identified on my records and repeatedly told medical reception staff that I am deaf, and therefore am not able to talk on the phone, I would often receive a phone call message asking me to call them.

I remember at one appointment I had to lie on my stomach and have my face turned away from the doctor, looking at a wall. Because I am dependent on visual communication, one of the nurses had to stand in the very narrow space between the table and the wall to relay what the doctor was saying. 

Though I faced many struggles with communication, both my breast surgeon and my plastic surgeon were very responsive and replied personally to my emails. They also had great staff who knew and respected my communication needs. I had a caring oncologist who gave me her private number – which I am very appreciative for as it meant I was able to directly reach her via text messaging in emergencies, rather than via her pager service which wasn’t accessible.

Going through breast cancer you are inundated with information which is even harder to navigate when you have a disability. I found BCNA’s resources accessible and they helped me prepare for my visits with my treating team.

The booklets and factsheets, online network, and transcripts from the Upfront about breast cancer podcasts were beneficial because of their accurate and up to date information about breast cancer and provided insight into other people’s experiences which I could relate to.

Some advice that I would give to others with a disability and going through breast cancer treatment would be:

• Listen to the advice of others in the BCNA community as they also apply to you. E.g., take a support person with you to appointments so they can write notes for you.
• Let your medical team know if you have a disability and what your preferred communication methods are/ how you would like to be contacted.  
• If you have an Auslan interpreter with you, explain to the medical team or reception staff that the interpreter is only booked for a limited time. This way if the doctors are running late, you can ask the be seen before the interpreter needs to leave.
• If you are hard of hearing tell the receptionist that they need to get your attention visually instead of calling out your name.
• Let your medical team know if you need information provided to you in Easy English, another language, or in a different format. Many organisations cater to this, including BCNA.