My name is Gaynor Hart. I’m a wife and mother of two young daughters, now 11 and 13, living
in Nova Scotia. I work full time as a corporate clerk in a busy law firm in downtown Dartmouth.
I’m writing to the Standing Committee on Health to share my story regarding the breast cancer
screening guidelines and how they negatively impacted our life.

Fortunately, in Nova Scotia women can self-refer to start mammograms at age 40. Sadly, my
mother passed away when I was 24 of cancer of the maxillary sinus which metastasized to her
brain so I had seen the horrors of cancer, and treatment, at a young age. This has always led me
to be extremely pro-active with anything that can diagnose cancer at an early stage. I signed up
for the Nova Scotia Breast Screening Program and had annual mammograms from my early 40’s
without fail.

In 2018, just before my scheduled mammogram in June, I noticed a lump underneath my right
breast. I was 47 years old. I told the radiographer and she marked the area with a triangular
sticker. She said it would show on the mammogram and notify the doctor reviewing it to pay
extra attention to that area. A week later, I received an all-clear letter to make an appointment for
the following year. I was relieved and presumed it must just be a cyst.

Thankfully in September I had an appointment with my doctor for my PAP smear. I mentioned
the lump and said that I wasn’t concerned as I had a clear mammogram recently in June but it
was now noticeably bigger and causing some discomfort. She felt the lump and sent me for a
diagnostic mammogram at the IWK. A few weeks later at this appointment the radiographer told
me that she could feel the lump but it wasn’t showing up on the mammogram as I had dense
breasts! What was this? I had never heard of this or been told I had this or the implications that
this might have on my annual screening mammograms. She immediately took me to a room and
performed an ultrasound. She decided to discuss her findings with a doctor and when she
returned, I was told that I would be recalled for a biopsy.

After the biopsy, I had my follow up appointment with my doctor. On 6 November 2018 I
couldn’t believe that I was sitting in my doctor’s office, with my husband, hearing that my
seemingly insignificant lump, that hadn’t showed up on any of my annual mammograms over the
years, was in fact breast cancer! From that moment it was a whirlwind of emotions and
appointments. I met with surgeon at the IWK. He informed me that I had invasive lobular
carcinoma and together we decided it was best for me to have a bilateral mastectomy. Invasive
lobular carcinoma is more likely to recur in the opposite breast and is very difficult to detect with
mammography alone. I had no confidence that if a recurrence happened that it would be found as
the original, even with a lump, could not be seen! How were we going to tell my daughters? At
that time they were just 6 and 8 and we had no family here. We were alone here, having
emigrated to Nova Scotia 10 years prior, and both our families were in the UK.

My bilateral mastectomy was performed 13 December 2018. It was a Christmas like no other. At
my follow up appointment in January I was told that my pathology wasn’t good. My cancer was
advanced. It had spread to 6 of the 7 axillary lymph nodes he removed. It was 3cms in size and
was Stage 3. At that size it had apparently been growing for 3-5 years! I would’ve been 42-45
years old. All that time I was having annual screening mammograms! If only I had been told I
had dense breasts and would’ve been given additional screening, like ultrasound, it might have
been detected at an earlier stage, meaning less invasive treatment and I would have a better
prognosis. I also had no idea that lobular carcinoma was also challenging for mammography. I
was told that I would need chemotherapy and radiation. My heart stopped as I heard that an
appointment would be made to see a medical oncologist. I’d already had an MRI of the chest but
now I had appointments for a CT and a bone scan to check for metastasis too. I couldn’t believe
it.

My FEC-D chemotherapy started in February 2019. It was the hardest, most horrendous thing
I’ve ever gone through. Much harder than the bilateral mastectomy. A few hours after getting
home, despite a multitude of tablets to combat the side effects I was really ill. I was poorly for 2
weeks out of 3 for every cycle. I had 6 cycles in total. I was told that I would lose my long hair
and had already had it cut extremely short before I began. It only took just over a week after my
first treatment when it started to fall out in the shower. We made the decision for my husband to
shave my head while our girls were present so they understood. I hated my bald head. No one,
except my husband and daughters ever saw it. Every night, before my chemotherapy the next
morning, I would cry. I knew what it would be like to sit there in the room, nurses trying to find
a vein, often unsuccessfully requiring several tries, and just waiting for the bags of toxins to
empty into my body. That dreadful feeling that crept over me making me nauseated for weeks. It
got to the point that they had to abandon one arm half way through. My veins were so damaged I
ended up with phlebitis and couldn’t straighten it. This in turn led to a frozen shoulder needing
weeks of physiotherapy. Even now, years after my treatments, it’s very difficult to use my veins
for bloodwork or to inject the radioactive tracers before scans. I had so many nasty side effects
and even my toe nails turned black. A nurse came to our house after each treatment to give me a
Neulasta shot which gave me severe bone pain for days. The entire experience was horrific and
difficult to go through with 2 young children.

After chemotherapy came radiation. This meant going everyday to the radiation centre in
Halifax. My three weeks of daily visits cut into the school summer holidays so my daughters
came with me and sat in the waiting area alongside so many others waiting in their gowns for
their treatment, some bald and some looking very emaciated. Radiation was actually a relief from
chemotherapy and, despite going every single day for weeks, it was over very quickly with
minimal skin damage and thankfully no nausea. As my cancer was hormone receptor positive
next came my aromatase inhibitor Letrozole. I was too young to take this as it’s only prescribed
for post menopausal women, so I endured ovary suppression injections. These were huge and
every couple of months until my Salpingo oophorectomy surgery in October where my ovaries
and tubes were removed, negating the need for up to 10 years of injections. I was forced into
menopause at 49 years old and have all the issues that come with that. I have to have bone
density scans every 2 years as I am now more prone to osteoporosis. I also live with the constant
fear of recurrence as my cancer had spread to the majority of the axillary lymph nodes removed.
Lobular breast cancer is very unique in that it can spread to very different sites in the body to
ductal breast cancer. It also has later recurring metastasis and can return many years after the
original diagnosis. It’s like living with a ticking time bomb.

My hope is that Breast Cancer Screening should be standardized across the provinces. It should
not matter which province you live in as to whether your breast cancer will be detected or not.
The Canadian Task Force should at least have a breast cancer expert voting on the panel this
time when it reviews the current guidelines. In my opinion, and coming from someone who has
been severely let down by the results of the current guidelines, I believe screening should,
without a doubt, begin at 40 years old. Those women with dense breast tissue should be offered
supplemental screening such as ultrasound as a minimum, ideally contrast enhanced
mammography or MRI. I was a category C and a 3cm lump could not be seen! Anyone with a
category D has a lesser chance of breast cancer being detected before it has reached stage 3 or 4.
During my treatments I met lots of women going through the same as me, most of us were in our
40’s. I’ve known some as young as their 30’s sadly lose their life to this dreadful disease, leaving
behind their young families. In Nova Scotia, women are now notified of their density however, a
woman cannot, under any circumstance, get an ultrasound having been told they are category C
or D. This seems ludicrous to me that you would be informed that mammography may not detect
your breast cancer because you are considered dense, but due to the current Canadian Task Force
Guidelines, you cannot have access to even an ultrasound based on this finding. This is just mind
blowing to me.

I cannot describe in words how difficult it is for a mother to tell her young children that she has
cancer and have those children watch her deteriorate through treatment that she might not have
needed had her cancer been detected earlier. How difficult it is to carry on a normal life knowing
you’re high risk for recurrence and that one day the cancer will return, it’s just a matter of when
and where. Please, I implore you, to do better for the women of Canada. It’s discriminatory and
unethical to not offer the screening that can save Canadian lives. Don’t let more women go
through the horrors that our family has been through for the sake of outdated guidelines.

Yours sincerely,
Gaynor Hart

Gaynor, thank you for your powerful submission to the federal Standing Committee on Health for the Women’s Health Study.
DBC.