My name is Gaynor Hart. I\u2019m a wife and mother of two young daughters, now 11 and 13, living
\nin Nova Scotia. I work full time as a corporate clerk in a busy law firm in downtown Dartmouth.
\nI’m writing to the Standing Committee on Health to share my story regarding the breast cancer
\nscreening guidelines and how they negatively impacted our life.<\/p>\n
Fortunately, in Nova Scotia women can self-refer to start mammograms at age 40. Sadly, my
\nmother passed away when I was 24 of cancer of the maxillary sinus which metastasized to her
\nbrain so I had seen the horrors of cancer, and treatment, at a young age. This has always led me
\nto be extremely pro-active with anything that can diagnose cancer at an early stage. I signed up
\nfor the Nova Scotia Breast Screening Program and had annual mammograms from my early 40’s
\nwithout fail.<\/p>\n
In 2018, just before my scheduled mammogram in June, I noticed a lump underneath my right
\nbreast. I was 47 years old. I told the radiographer and she marked the area with a triangular
\nsticker. She said it would show on the mammogram and notify the doctor reviewing it to pay
\nextra attention to that area. A week later, I received an all-clear letter to make an appointment for
\nthe following year. I was relieved and presumed it must just be a cyst.<\/p>\n
Thankfully in September I had an appointment with my doctor for my PAP smear. I mentioned
\nthe lump and said that I wasn\u2019t concerned as I had a clear mammogram recently in June but it
\nwas now noticeably bigger and causing some discomfort. She felt the lump and sent me for a
\ndiagnostic mammogram at the IWK. A few weeks later at this appointment the radiographer told
\nme that she could feel the lump but it wasn\u2019t showing up on the mammogram as I had dense
\nbreasts! What was this? I had never heard of this or been told I had this or the implications that
\nthis might have on my annual screening mammograms. She immediately took me to a room and
\nperformed an ultrasound. She decided to discuss her findings with a doctor and when she
\nreturned, I was told that I would be recalled for a biopsy.<\/p>\n
After the biopsy, I had my follow up appointment with my doctor. On 6 November 2018 I
\ncouldn\u2019t believe that I was sitting in my doctor’s office, with my husband, hearing that my
\nseemingly insignificant lump, that hadn\u2019t showed up on any of my annual mammograms over the
\nyears, was in fact breast cancer! From that moment it was a whirlwind of emotions and
\nappointments. I met with surgeon at the IWK. He informed me that I had invasive lobular
\ncarcinoma and together we decided it was best for me to have a bilateral mastectomy. Invasive
\nlobular carcinoma is more likely to recur in the opposite breast and is very difficult to detect with
\nmammography alone. I had no confidence that if a recurrence happened that it would be found as
\nthe original, even with a lump, could not be seen! How were we going to tell my daughters? At
\nthat time they were just 6 and 8 and we had no family here. We were alone here, having
\nemigrated to Nova Scotia 10 years prior, and both our families were in the UK.<\/p>\n
My bilateral mastectomy was performed 13 December 2018. It was a Christmas like no other. At
\nmy follow up appointment in January I was told that my pathology wasn\u2019t good. My cancer was
\nadvanced. It had spread to 6 of the 7 axillary lymph nodes he removed. It was 3cms in size and
\nwas Stage 3. At that size it had apparently been growing for 3-5 years! I would\u2019ve been 42-45
\nyears old. All that time I was having annual screening mammograms! If only I had been told I
\nhad dense breasts and would\u2019ve been given additional screening, like ultrasound, it might have
\nbeen detected at an earlier stage, meaning less invasive treatment and I would have a better
\nprognosis. I also had no idea that lobular carcinoma was also challenging for mammography. I
\nwas told that I would need chemotherapy and radiation. My heart stopped as I heard that an
\nappointment would be made to see a medical oncologist. I\u2019d already had an MRI of the chest but
\nnow I had appointments for a CT and a bone scan to check for metastasis too. I couldn\u2019t believe
\nit.<\/p>\n
My FEC-D chemotherapy started in February 2019. It was the hardest, most horrendous thing
\nI\u2019ve ever gone through. Much harder than the bilateral mastectomy. A few hours after getting
\nhome, despite a multitude of tablets to combat the side effects I was really ill. I was poorly for 2
\nweeks out of 3 for every cycle. I had 6 cycles in total. I was told that I would lose my long hair
\nand had already had it cut extremely short before I began. It only took just over a week after my
\nfirst treatment when it started to fall out in the shower. We made the decision for my husband to
\nshave my head while our girls were present so they understood. I hated my bald head. No one,
\nexcept my husband and daughters ever saw it. Every night, before my chemotherapy the next
\nmorning, I would cry. I knew what it would be like to sit there in the room, nurses trying to find
\na vein, often unsuccessfully requiring several tries, and just waiting for the bags of toxins to
\nempty into my body. That dreadful feeling that crept over me making me nauseated for weeks. It
\ngot to the point that they had to abandon one arm half way through. My veins were so damaged I
\nended up with phlebitis and couldn\u2019t straighten it. This in turn led to a frozen shoulder needing
\nweeks of physiotherapy. Even now, years after my treatments, it\u2019s very difficult to use my veins
\nfor bloodwork or to inject the radioactive tracers before scans. I had so many nasty side effects
\nand even my toe nails turned black. A nurse came to our house after each treatment to give me a
\nNeulasta shot which gave me severe bone pain for days. The entire experience was horrific and
\ndifficult to go through with 2 young children.<\/p>\n
After chemotherapy came radiation. This meant going everyday to the radiation centre in
\nHalifax. My three weeks of daily visits cut into the school summer holidays so my daughters
\ncame with me and sat in the waiting area alongside so many others waiting in their gowns for
\ntheir treatment, some bald and some looking very emaciated. Radiation was actually a relief from
\nchemotherapy and, despite going every single day for weeks, it was over very quickly with
\nminimal skin damage and thankfully no nausea. As my cancer was hormone receptor positive
\nnext came my aromatase inhibitor Letrozole. I was too young to take this as it\u2019s only prescribed
\nfor post menopausal women, so I endured ovary suppression injections. These were huge and
\nevery couple of months until my Salpingo oophorectomy surgery in October where my ovaries
\nand tubes were removed, negating the need for up to 10 years of injections. I was forced into
\nmenopause at 49 years old and have all the issues that come with that. I have to have bone
\ndensity scans every 2 years as I am now more prone to osteoporosis. I also live with the constant
\nfear of recurrence as my cancer had spread to the majority of the axillary lymph nodes removed.
\nLobular breast cancer is very unique in that it can spread to very different sites in the body to
\nductal breast cancer. It also has later recurring metastasis and can return many years after the
\noriginal diagnosis. It\u2019s like living with a ticking time bomb.<\/p>\n
My hope is that Breast Cancer Screening should be standardized across the provinces. It should
\nnot matter which province you live in as to whether your breast cancer will be detected or not.
\nThe Canadian Task Force should at least have a breast cancer expert voting on the panel this
\ntime when it reviews the current guidelines. In my opinion, and coming from someone who has
\nbeen severely let down by the results of the current guidelines, I believe screening should,
\nwithout a doubt, begin at 40 years old. Those women with dense breast tissue should be offered
\nsupplemental screening such as ultrasound as a minimum, ideally contrast enhanced
\nmammography or MRI. I was a category C and a 3cm lump could not be seen! Anyone with a
\ncategory D has a lesser chance of breast cancer being detected before it has reached stage 3 or 4.
\nDuring my treatments I met lots of women going through the same as me, most of us were in our
\n40\u2019s. I\u2019ve known some as young as their 30\u2019s sadly lose their life to this dreadful disease, leaving
\nbehind their young families. In Nova Scotia, women are now notified of their density however, a
\nwoman cannot, under any circumstance, get an ultrasound having been told they are category C
\nor D. This seems ludicrous to me that you would be informed that mammography may not detect
\nyour breast cancer because you are considered dense, but due to the current Canadian Task Force
\nGuidelines, you cannot have access to even an ultrasound based on this finding. This is just mind
\nblowing to me.<\/p>\n
I cannot describe in words how difficult it is for a mother to tell her young children that she has
\ncancer and have those children watch her deteriorate through treatment that she might not have
\nneeded had her cancer been detected earlier. How difficult it is to carry on a normal life knowing
\nyou’re high risk for recurrence and that one day the cancer will return, it’s just a matter of when
\nand where. Please, I implore you, to do better for the women of Canada. It’s discriminatory and
\nunethical to not offer the screening that can save Canadian lives. Don\u2019t let more women go
\nthrough the horrors that our family has been through for the sake of outdated guidelines.<\/p>\n
Yours sincerely,
\nGaynor Hart<\/p>\n
Gaynor, thank you for your powerful submission to the federal Standing Committee on Health for the Women’s Health Study.
\nDBC.<\/p>","protected":false},"excerpt":{"rendered":"
My name is Gaynor Hart. I\u2019m 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…<\/p>","protected":false},"author":4,"featured_media":78088,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[83],"tags":[],"class_list":["post-78087","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories"],"yoast_head":"\n