Breast Cancer: “You don’t have to fit into anyone’s idea of what a woman should be”

Hi Tina, 

Thank you for agreeing to tell your story to the Carenity audience. 

First of all, could you tell us more about yourself? 

I am a professional artist and a retired fine arts professor. I live on the west coast of Canada. My husband and I have been together for 25 years. I don’t cook. 

Could you tell us when you were diagnosed with breast cancer? 

I have been diagnosed twice. The first time was in 2011. The second, on the other side was in 2015. Although I was told that contralateral breast cancer is rare - it happened to me. 

What alerted/prompted you to consult a doctor? What type of tests did the doctor run? How did you feel when you were diagnosed? 

The first symptom was a persistent lump. Contrary to what I had read, that breast cancer didn’t hurt , it did. The mythology that if it hurts it isn’t cancer is simply not true. Additionally I had a history of breast cysts and lumps that always proved to be nothing. Unfortunately, those two things combined made me complacent. 

I saw my doctor who booked a mammogram and ultrasound. After those results I had a core needle biopsy. And there it was. Breast Cancer. Once the diagnosis was established I had the usual tests: X-rays, CT scan, bone scan and an ECG to determine if there was a spread. 

Mostly at this point I was just stunned. Although my mother had been diagnosed at 48 I was 54 and I thought I had already dodged a bullet. I have spent my life exercising: dance, running, skiing, exercise classes, weights, yoga, aerobics. I don’t have a weight problem. I don’t smoke. I don’t take drugs. I drink very little. I have for the last 25 years eaten predominantly organically, I don’t eat red meat , never drink soft drinks and rarely have sugar. I did everything they tell you to help avoid cancer. And yet… here I was. I later did genetic testing but I do not have a cancer gene. My oncologist suspects I have one they have not found. 

What type of breast cancer do you have? What distinguishes this type of cancer from others? 

Both of mine were the same: ER+ and PR +. I believe this is the most common. 

What treatment did you receive? Were you satisfied with it? Did you experience any side effects? 

For the first diagnosis, Stage 2B, I had two surgeries: a lumpectomy (removal of the tumour) and a secondary revision to get the stray cells in my chest wall. I also had all of my lymph nodes removed on the right side. I had 6 months of chemotherapy followed by 15 rounds of radiation. The side effects from chemo were extreme and some still haunt me. My hair never grew back - I lost 50% of it permanently. I choose to buzz it so I can call it a style and not fuss over the thin parts. My eyebrows and eyelashes did not fare well either. They came back thin and sparse. 

The second diagnosis was caught very early. It was Stage 1A. The surgeon removed three small tumours and one lymph node. The node was clear. Surgery was followed by another 15 rounds of radiation. The physical side effects were minimal. 

Unfortunately the mental ones were not. I was diagnosed with high anxiety and PTSD. This is a part of breast cancer survival that no one talks about. The fear of reoccurrence. After the second one that terror was out of control. After continued multiple mammograms, ultrasounds, biopsies, CT scans, PET scans I could not handle the stress of constant monitoring. I contacted my oncologist and I told him I wanted a double mastectomy. He agreed that in my case it was probably the right course to take. 

The surprise came when I told him I did not want reconstruction. I wanted to be flat. No more surgeries. No foreign objects in my body. My surgeon was even more shocked and repeatedly told me that I would change my mind. During my consult I showed him images of both good and bad results of a flat closure (Aesthetic Flat Closure). Although he insisted that I would want reconstruction in the future to feel “whole” I stood my ground and asked “can you do it or not?” He said “yes’ and did. Oddly, after I was finished he quietly said to me at my follow up appointment “You dodged a bullet. There are lots of complications”. 

I had spent several months looking at options. Thanks to social media I saw what some women endured with their implants, Breast Implant Illness, chronic pain/discomfort and even flat denial by surgeons. The problem for most newly diagnosed women is they only have a very short amount of time to make a huge decision. Because I was not looking at an active cancer diagnosis I could investigate all of the options: pros and cons. 

I had my DMX in December of 2019 and on Christmas Eve my oncologist called to tell me the pathology was clear. I was NED (no evidence of disease). 

You are active on social networks under the handle @not_in_the_pink_. Was this the case before? Why did you decide to talk about your battle with cancer on social networks? How does sharing your story make you feel? 

After my first diagnosis I had a lot to say and @not_in_the_pink_ allowed me to do so. It seemed that some things like side effects were underplayed and some over played like positivity. I decided I would write about it. I wrote and illustrated a book called "Not in the Pink". Published in 2014 it won several awards and I spent a great deal of my time doing readings, podcasts, and talks. 

I was so shocked with my second diagnosis I could barely wrap my head around it. I had been active on Facebook but most of my Not in the Pink posts were about my book and recovery. I was no longer recovering I was in one more cancer treatment protocol. I knew there was another book in there but I was busy and wanted a break from all of it. I laugh when people ask me if writing a book was therapeutic. I always answer by saying if I wanted therapy I would be on a beach somewhere with my girlfriends not agonizing over language and images. 

After my double mastectomy, Covid19 shut down the world and I was stuck at home still on leave from my job. At that point I had spent enough time talking to other women, in person and online to realize how many of us “flatties” there were. Women who were doing this on their own terms, refusing to bow to a culture that kept telling them they would not look like “real women” without breasts. We are surrounded by medical professionals, family and friends who insist that you must have breasts to fit in and feel normal. 

I have never been great with fitting in and I was not doing it at the cost of my health. I thought about what I could contribute to this dialogue. One of my long standing passions is fashion. I read a lot of advice about clothing if you decide to go flat and not wear prosthetics. The biggest buzz word seemed to be “camouflage”. It was suggested that you should wear scarves, ruffles, drapes and patterns. I felt like I was suddenly an extra on “Little House on the Prairie’. No. No. No. Not for this woman. And I have discovered not for a lot of us. I started my Instagram account about flat fashion. I was determined to show women they could do this on their terms. They could camouflage, they could flaunt and I do both. Honestly my only thought was if I could help one woman through some of this then I accomplished something. It has proven to be much bigger than that and I love the connections I have made through my account. I am just getting started. And there will be another book. 

Would you say cancer has changed your outlook on life? If so, in what ways? 

I know that everyone loves to talk about breast cancer in terms of what they discovered. I am pretty sure the only thing I learned was don’t get cancer. I really do not understand why a potentially fatal disease is seen as a lesson you needed to learn. It’s not enough that we fight for our lives but we need to be heroic and learn something while we are doing that. The arrogance behind that statement is mind blowing. And we have to stop making cancer patients feel guilty when they haven’t and are simply happy to have survived. 

I still love my life. I did before. I do now. If anything I might be more outspoken although I am not sure if that is possible. 

Cancer and cancer treatments can cause big physical changes. Did you need to adjust to a new appearance? What tips and tricks do you use to feel more feminine? 

The new appearance is a huge adjustment. I lost my breasts and most of my hair: two things of utmost importance to be feminine in our society. We have a very long way to go towards acceptance of anything outside the norm. Even social media can be a fight with Instagram and Facebook removing photos and freezing accounts, even though they claim to support mastectomy images. Almost every flat advocate I know who is on social media has had the same struggle. 

I am still adjusting. Sometimes, I catch a glimpse of myself in the mirror and wonder what other people see. Sometimes, I see the facial expressions when people think I am not looking. Sometimes, people are oblivious. Some people are rude. Some are so supportive it brings you to your knees. I made the best choice I could for my body and my health. Every women in this position needs to do the same. 

As for feeling feminine… I never stopped. I have always loved dresses, jewellery, lingerie, make up. Shoes… I still wear much of what I did before. But, I must admit to occasionally playing with more androgynous and edgier looks. Simply because I can. 

Have you had to adapt your lifestyle (diet, sleep, work, etc.)? If yes, in what ways? 

Sleep was the biggest struggle for me. My saving grace was cannabis. It was legalized here several years ago and for me it is a good sleep aid. I have always been dedicated to exercise and that continues. I still have a very clean diet and I have retired from teaching. I have added meditation and occasional counselling sessions as I still suffer from anxiety and PTSD. That will probably always be there but my tools for coping with it are better now. 

Did your loved ones support you? Was it easy for you to talk about the disease to those around you? 

The thing about having cancer is you really are not prepared for any of the things that happen. Every diagnosis is different. Every set of circumstances is different. Some deal with it by going to ground and being quiet. Some talk very freely. I was somewhere in the middle when I started. I am far more open about it now. 

My husband was a rock. Some of my close friends were there for me when I needed them. And some ghosted me unable to handle a cancer diagnosis. Everything changes in your life and you may not be able to fit into their’s anymore. The only thing you can expect is that some will be there for you. Some will not. Some don’t know how and do the best they can. Some you are better off without. It is a sad part of breast cancer that some will let you down. And you will find support from the unexpected places. 

Finally, what advice would you give to Carenity members also affected by breast cancer? 

Find a tribe that supports you. Hold your “people” close. Keep being you. Find the path that works for you: it might be pink and pretty, it might be dark and gritty. We all have different coping mechanisms and you need to find the ones that are the best for you. You don’t have to fit into anyone’s idea of what a woman should be. 

Any last thoughts? 

Please can we put “toxic positivity” to rest. Putting a smile on your face to make those around you comfortable is not your responsibility. This is not an attitude: it is a disease. Allow yourself the grace to feel what you have to. You will have good days, bad days, dreadful days and sometimes they will be the same day. 

Many thanks to Tina for sharing her story!       

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