By Christine McKay
I was shocked to learn I had breast cancer. My previous mammograms had never showed anything. I noticed that one of my nipples was inverted which sent me to my family doctor. I was then referred to the Breast Health Clinic in Ottawa on an urgent basis where I had tests done and was informed I had advanced invasive lobular breast cancer.
The next month after diagnosis was a blur, with many scans. I met my surgeon, radiation oncologist, and medical oncologist. I must have looked like a deer in the headlights when I met my medical oncologist. He took my hand and said I would get through this. I felt cared for.
I had never heard of lobular breast cancer before; it doesn't present as a lump most times but as an area of dense tissue. This makes it difficult to identify in self-exams if you have dense or lumpy breast tissue. That was 10 years ago in January 2013. It hasn't been all smooth sailing, but over-all treatment hasn't left any major long-term side effects to date.
Unfortunately, I’ve have had four skin recurrences of lobular breast cancer in my chest wall since 2015, which is an unusual presentation, even for lobular breast cancer which often metastasizes to uncommon sites. Since having “the works” for treatment I have been on tamoxifen, letrozole, exemestane, and now fulvestrant. With each skin recurrence, I have had the skin excised and biopsied, been re-scanned and then been switched to another systemic therapy.
Even now, 10 years later, I lack the energy reserves I used to have and I have to pace my activities. If I need a day of doing nothing, I take it. The COVID pandemic has decreased my social and recreational activities. I do miss my former activity level. Socially, my friends and family have provided a lot of support and caring.
I lost my only sister to bile duct cancer two years after I was diagnosed with breast cancer, which was a blow. My career was cut short. Financially, I am poorer in retirement than I would have been if I could have continued working after diagnosis. I tried to return to work but went back on long-term disability (I was fortunate I had this through work) after less than a year. I find it unfair that those with metastatic cancer don't qualify for the federal Disability Tax Credit until they are very ill. There are a lot of extra expenses that are associated with a cancer diagnosis, especially when it is advanced.
I am aware that I am at a high risk of recurrence of lobular breast cancer and that it often metastasizes to unusual sites such as the gastric tract, the orbit(s) of the eye, and the leptomeninges in the brain as well as the usual ductal breast cancer areas of metastasizes such as lungs, liver, and bones. It is also more likely to recur after 10 years. There isn't much I can do to prepare myself for this, so I try to not focus much on my future health regarding breast cancer.
I think the biggest impact I have had on others is being open about my lobular breast cancer diagnosis and sharing the ups and downs of treatment. I have become a patient research advocate through the Lobular Breast Cancer Alliance (LBCA) and the Canadian Breast Cancer Network (CBCN). Through my breast cancer activism I have been involved in interesting projects like the development of a survey to highlight gaps in knowledge regarding metastatic lobular breast cancer, being the patient research advocate on two funding grant applications, and contributing to the development of the patient navigation tool by CBCN.
I have met some wonderful women and lost quite a few to metastatic breast cancer. I have learned that it is important to believe in your knowledge of your body and to persevere to get any change in health looked at and treated, if necessary. This is particularly important with lobular breast cancer and its unusual sites of metastases.
I knew nothing about the lobular breast cancer subtype when I was diagnosed and wish that messaging around breast cancer detection would stop being mostly lump-focused and broaden the education to include signs of breast cancer which organizations such as Know Your Lemons have done. Additionally, I would like to get away from the pink frilly messages during Breast Cancer Awareness Month which, in my opinion, don’t really convey the seriousness of breast cancer.
My goals going forward as a breast cancer advocate are: I would like to see more research funds go to the understanding and treatment of metastatic breast cancer and see more research that includes those with lobular breast cancer.
Next generation sequencing for genomic mutations also needs to be provided for by the provincial governments so that treatments are personalized and time, as well as health, is not wasted on treatments that aren't going to work. In the meantime, private insurers need to start paying for this as a health plan benefit.
I would like to see the federal Disabled Tax Credit (DTC) include those with a metastatic cancer diagnosis to decrease the financial burden and toxicity that women and their families experience. The current bar to receive this tax credit is impossibly high for most with metastatic cancer.
Breast cancer patients and advocates should be valued for the expertise they bring to research and policy. I would also like to see more diversity and equity in the patient advocate population with outreach done to help those who are particularly marginalized get support and bring their experience to the breast cancer arena.
Living with Lobular Breast Cancer in Canada (Facebook group)
Lobular Breast Cancer Alliance
Information about skin metastases