I’m known for talking about ways to save money. Today I want to save lives. If this post isn’t for you, it may be for someone you know or love. During my triple negative breast cancer (TNBC) diagnosis and treatment I read many personal blogs by women who have walked this path before me. Cancer can be lonely, these women changed that. So I’m adding my public voice to the breast cancer experience, because f-ck cancer. Early detection saves lives.
You are two types of people. You are the person before a cancer diagnosis. Then you’re the person after.
On May 31st 2019 I was diagnosed with Triple Negative Breast Cancer (TNBC). In the world of cancer survivors and thrivers, this day is often recognized as my “Cancerversary”. So, Happy First Cancerversary to me? Question mark?
To be honest, I’m not sure how to live through this day. Do I celebrate with cake? Cry into my pillow? Buy myself a gaudy pink T-shirt?
F-ck it – I’m gonna write some (hopefully) life-saving stuff.
1 in 8 Women
The Canadian Cancer Society estimates that 1 in 8 women will develop breast cancer during their lifetime, and 1 in 33 will die from it. It’s too common.
So I’m doing something few women in the public eye do, and that’s talk about the specifics of a breast cancer diagnosis. Too many articles announce “so and so has breast cancer” but fail to explain the type, prognosis, and treatment plan. This glossing over of details and pretty pinkification of the process fails to help those feeling alone or struggling with terrifying decisions.
Celebrities just seem to announce a breast cancer diagnosis and then show up later with pink partnership deals, smiles, and perfect hair. WTF? That’s NOT how it works.
I want to change that. So I’m talkin’. I’ll also talk a bit about finances and how I survived not working for a year.
So let’s do this. F-ck cancer.
Breast Cancer is not a single disease
So, one year ago today I was diagnosed with Triple Negative Breast Cancer (TNBC), Grade 3 invasive ductal carcinoma (IDC), Stage 1a (or T1cN0M0 using the newer staging system) .
Unbeknownst to me (at the time) there are several types of breast cancer, it’s not a single disease.
There’s the type of tissue where the boob cancer develops, the tumour grade from 1 to 3 (Grade 3 being the most aggressive), and then there’s Hormone Receptor Status and HER2 Status, and let’s not forget cancer stage. It’s a lot.
You don’t want ANY type of breast cancer, but Grade 3 Triple Negative Breast Cancer (TNBC) is the one my oncologist likes least.
What is Triple Negative Breast Cancer?
What does Triple Negative Breast Cancer mean? It means I tested negative for all three known breast cancer receptors — estrogen (ER), progesterone (PR), and human epidermal growth factor receptor 2 (HER2). Having one or all three of these tumour receptors sucks, but there are targeted treatments for hormone positive and HER2 positive breast cancers, making their diagnosis and prognosis more favourable in the oncology world.
While breast cancers fuelled by hormones or HER2 are more common, TNBC is a rarer subtype accounting for around 10-15% of total breast cancers. Triple Negative Breast Cancer tends towards younger women, Black Women, or those with a BRCA genetic mutation. Triple Negative Breast Cancer also tends to grow and spread faster so it’s often found at later stages, has limited treatment options, and many scientific papers report that TNBC has the worst prognosis of all breast cancer types.
High mortality rates with inadequate therapeutic options were part of my initial diagnosis. I was devastated.
Breast Cancer: Early Detection is Key
A key to surviving breast cancer, especially Triple Negative Breast Cancer, is finding it early. Early detection for me started in high school in 1989 during the AIDS crisis. Public health nurses were dispatched to many Ontario high schools to basically teach us how not to die from sex. It was a scary time.
With five minutes left in my class’s AIDS session, our health nurse didn’t waste one second and threw in a super quick lesson on breast health and the signs of breast cancer. She mentioned nipple discharge as a symptom.
Fast-forward 30 years and I’m in my GP’s office with a leaking nipple. I’d like to thank the health nurse for her five minute chat because she f-cking saved my life.
I didn’t have a palpable lump at the time, but my right breast sent an early signal. And I listened.
I’d like to add myself to the growing list of people who saved my life.
You’re not “Too Young” for breast cancer
I’m surrounded by too many women in their 20s, 30s, and 40s who were denied early screening because they were deemed “too young” by their doctors to have breast cancer. This must change.
You are not “too young” to get breast cancer. Younger women tend to have more aggressive cancers. Check your breasts. And advocate for yourself — ask for an ultrasound or MRI along with your mammogram if you have dense breasts.
I’m getting my post chemo mammo and US today. #tnbc https://t.co/oPk6cYXbID
— Kerry K. Taylor (@squawkfox) May 27, 2020
Breast cancers in premenopausal women tend to be more aggressive and are often missed because young women are considered “too healthy” to get cancer. This can lead to a Stage 3, or a Stage 4 Metastatic Breast Cancer (MBC) diagnosis.
My advice to every woman is to advocate strongly for yourself. Be bold and tell your doctor you want a mammogram or an ultrasound. Then tell them again. OR find another doctor who takes action. This is not a drill.
Putting off a breast exam because you’re scared is normal. Not wanting to see a doctor because you found a lump or are experiencing a breast change is normal. Go anyway. Find the f-cker early. You have my permission. Now go.
My GP took my concerns seriously and I was monitored early. When a lump became palpable three weeks after an initial check, my case was escalated for an ultrasound with a core needle biopsy.
Given the aggressiveness of my tumour (Grade 3), and because it grew from nothing to 1.8 cm in three weeks, I was on the surgeon’s table a week after my diagnosis.
I’d like to add my GP and surgeon to the list of people who saved my life.
Surgery, chemotherapy, and radiation (F-ck Me)
My tumour was located at the 12-o’clock position in my right breast. Given the size and solid shape of the mass, my surgeon performed a lumpectomy. The breast cancer surgery process often includes a sentinel lymph node biopsy (SLNB) (F-CKING OUCH), where a chain of nodes are removed to test for cancer spread within the lymphatic system.
To locate the sentinel nodes, I was injected with a radiotracer before surgery and then injected with a blue dye during surgery.
My pathology came back with clear margins and no lymphovascular invasion. All three of my removed sentinel nodes tested negative for cancer cells, so my cancer stage was deemed Stage 1a, or T1cN0M0 — nomenclature for the new staging system stating my tumour was between 1 and 2 cm (T1c), with no spread to my lymph nodes (N0), and no sign of metastasis (M0).
My boob is still blue from the injected dye. My oncologist refers to my blue boob as a “Bloob”. This is the only joke my oncologist has ever made, so let’s go with it.
Chemo, Triple Negative Breast Cancer, Stage 1a
Many Stage 1a breast cancer patients often skip the whole chemotherapy thing. I wasn’t so lucky. Being diagnosed with a Triple Negative Breast Cancer tumour, I was in the rare scenario where I found it early, but I still had to get hit hard with 8 rounds of dose-dense chemotherapy. F-ck.
These words from BC Cancer still haunt me:
“Chemotherapy is strongly recommended for all fit patients with TNBC of T1cN0 or higher stage, regardless of age and menopausal status.”
I could not believe I needed chemo, and I lived in denial throughout the whole course. Part of my brain is still in denial that I did chemo. The other part is mostly relieved I did it.
The next five months I went through dose dense AC-T adjuvant chemotherapy (PDF). For the science nerds the ‘A’ is Doxorubicin (Adriamycin), ‘C’ is Cyclophosphamide, and ‘T’ Paclitaxel (Taxol). Adriamycin is often referred to as the “Red Devil” because it’s a hard, hard chemo to go through and it’s cardiotoxic. It’s also blood-red in colour. Personally, I found Taxol far more challenging. Everyone is different.
I lost 20% of my total body weight and was hospitalized twice. Some women gain weight due to stress and the steroids they give you, but I lost all my muscle mass and body fat. It wasn’t pretty and I looked deathly.
For some reason pop culture likes to focus on chemo hair loss and head shaves. I dunno why – I was more buggin’ about losing my eyebrows. Everything grew back.
My advice to women (and men) about to start chemo for breast cancer is to find a young adult support group. The support I got from my local group meant everything to me as I navigated through the side effects and even challenges of parenting through cancer treatment. I got talked off more ledges and cliffs than I wish to count. They had my back, my front, and all the bits in between. Cancer can be a lonely diagnosis and treatment. Finding a group can change that.
My chemo nurse, Mary Beth, also brought the love. Her advice to me during chemo was to “Keep moving”. Daily exercise, from big walks to small baby steps made all the difference to recovering.
I’d like to add my cancer support group (May Cause Radiance), my oncologist, and Mary Beth to the growing groups of people who saved my life.
Radiation for Breast Cancer
The fatigue from radiation for breast cancer is underrated. Most days I could not get out of bed from the exhaustion. It is indescribable how radiation fatigue feels – it flattened me. I may be a writer but I do not have the words.
My radiation course for node-negative Grade 3 Triple Negative Breast Cancer with clean surgical margins was 60Gy, or 25 whole breast sessions and 5 boost sessions to my tumour bed. I was mapped and tattooed with three dots circling my breast for precise radiation treatment. Some people don’t care about the tattoos, but I despise those dots and will have them removed with laser treatment. Everyone is different.
Also, ask your radiation oncologist for all the skin care recipes – from saline soaks to specific creams to use. Do the skin care. Rest. Do more skin care. I healed with no skin discolouration. Do the skin care, it can help.
BRCA Genetic Testing
A simple blood test can reveal a lot. For Angelina Jolie it revealed she has a BRCA1 gene mutation. In her New York Times opinion pieces — My medical choice and Diary of a surgery — she explains her prophylactic double mastectomy and oophorectomy to reduce her risk of developing cancer.
Not everyone with a genetic mutation will develop breast cancer or ovarian cancer. Not everyone without a genetic mutation will be spared from a cancer diagnosis. But knowing where you stand can lead to life-saving decisions.
Within a day of being diagnosed with Triple Negative Breast Cancer my oncologist had me filling out forms for genetic testing. Because there is a strong link between Triple Negative Breast Cancer and the BRCA1 gene mutation (and because I’m considered young to have this disease) my oncologist wanted to be sure we were making the right treatment choices. I was tested for a full panel of possible genetic mutations beyond BRCA because there are many that can lead to breast and ovarian cancer.
Check out the site Facing Our Risk for a list of hereditary cancer genes and the prophylactic treatments available to become a cancer previvor.
So you’re all better now?
I said it at the beginning: You are two types of people. You are the person before a cancer diagnosis. Then you’re the person after.
I look at old photos and I don’t recognize myself – I don’t know that girl. She’s gone. A cancer diagnosis and treatment leave mental, emotional, and physical scars. And it’s OK to be not OK. I’m getting closer to fine but I’m not gonna spew some toxic happy cancer bull$hit to lessen the shock for people around me. I’m still in a state of shock myself, to be honest.
As a former high performance athlete with clean eating habits I’m still in a suspended state of disbelief that I got cancer. Cancer happens, full stop. We like to believe we have control over all the variables in our lives and can prevent cancer. News flash: you don’t and you can’t. The hard truth is cancer burst my illusion of the control bubble and left me gasping for air. I’m still catching my breath.
Stuff I’ve written about breast cancer so far:
Cancer Ghosting, for real!
And it’s not just me who changed. Cancer reveals a lot about those around you – your friends and your family. It’s really something when people you thought would be there for you suddenly disappear. Poof. Gone? The phenomenon is called cancer ghosting – the process of cutting ties with someone suddenly and with no explanation after a cancer diagnosis. This is prevalent in the cancer community. The upshot is you learn very quickly who matters in your life.
“When someone shows you who they are, believe them the first time.”
– Maya Angelou
I’d like to add my shrink to the never ending list of people who, you know, saved and continue to save my life. She also likes my writing, and that helps. Smile.
Disaster Proof Your Financial Life
I haven’t forgotten I’m a money expert and this is supposed to be a financial blog where money is sexy, delicious, and fun. But let’s keep it real – sometimes money ain’t fun. And sometimes $hit gets serious.
I’ve written a bit about what to do in an emergency with Your Money During the COVID-19 Pandemic. I’ll save how to deal with money after a diagnosis for another day, ‘cause that’s a big big topic deserving of another post.
Right now I’m Squawking about being prepared financially BEFORE life gets scary and real. After dealing with decades of job changes, multiple recessions, depression, and now a breast cancer diagnosis I’m a f-cking pro at disaster proofing my financial life.
Knowing the steps is easy. Taking the steps is a little harder. You have my encouragement, take the steps.
Build an Emergency Fund
I started keeping a stash of cash on the ready over 20 years ago. Building this fund has served me well and has helped me weather too many storms over the years. I started my emergency fund by making an automatic contribution of $10 to a high-interest savings account every paycheque with my first-ever job. I increased that amount, again making it an automated contribution from my checking account to a high interest savings account, as I got raises and got better at budgeting.
The automation is KEY because it removes the temptation and mental friction from having to make that choice to save and move the money twice a month. By making the saving process automatic I forgot the process was in place and the automation prevented the mental load of doing the thinking work to save. I didn’t have to remake the choice every month — the banking system did it for me.
Seeing the fund grow can be tempting. But I stopped myself from spending it by thinking how my Future Self would feel if I needed that money to survive. And the answer was always my Future Self would thank my Present Self for saving emergency money. Years of experience with being blindsided by layoffs, recessions, and now cancer have reinforced the habit of keeping an emergency fund on hand. I covered my own butt automatically. Thank you Past Self for saving the butt of my Future Self. Signed, all my Selves.
Critical Illness Insurance
I never thought I’d get cancer. I never thought I’d make the claim on my critical illness insurance policy. But I needed it. And I made the claim after my breast cancer diagnosis.
My oncologist helped me fill out the forms. He said, “It’s good you have this policy.” I said, “It sucks I need it.” But DAMN losing that bet against my health paid off when I didn’t HAVE to work during my cancer treatment. I didn’t have financial stress during the most stressful chapter in my life. I’ve seen too many women in chemo go back to work because they needed the income. It’s too much. Dealing with a potentially terminal disease AND making rent is just too much.
I got my policy 7-ish years ago when I went freelance, I was nearly 40. The premium was annoying to pay and wasn’t cheap. And to be honest I nearly cancelled the policy a year before my diagnosis, but again I thought about my Future Self. Would my Future Self appreciate the sacrifice of my Present Self? And more importantly, did my Present Self welcome the peace of mind insurance can bring? Yes and yes.
Explaining how to get or where to find critical illness insurance is worthy of another post. But for now I suggest looking into what your financial institution offers to get to know your options. I’ll be interviewing an expert on the topic for you soon.
So where am I going with this?
I don’t know. Life comes at you fast. One day everything changes. But some things remain the same — you guys are one of those things.
Many of you have been with me for over five or even ten years. Over this time you have shared your very personal stories and often cite how something I’ve written has touched you.
Thank you for reaching out to me.
All walks, many countries, all generations. Thank you.
Love love love,
Kerry