What No One Told Me When I Was Diagnosed With Breast Cancer

January 31, 2019

It is now a year since I was diagnosed with early breast cancer.

A year since my GP called me not ten minutes after I got home from having an ultrasound to tell me I needed a biopsy.

Eighteen months before this my sister was diagnosed with early breast cancer at 39 (no, it’s not genetic – just really bad luck). I thought for sure she’d taken one for the team. Surely lightning wouldn’t strike twice, right?

After her diagnosis, my mother and I were put onto yearly mammogram and ultrasound screening. I had this done in May. The technicians performing my scans made me feel as though I was wasting their time. I felt like telling them this wasn’t my idea! Those scans showed nothing of concern.

I then found a hard, pea sized lump on the far left of my right boob near my chest wall. I left it for a while then had my GP check it the next time I saw her in August. She thought it was a cyst and I agreed, seeing as I’d had many benign fibroadenomas and cysts over the years. I was handed an ultrasound referral and told to have it done in a few months if it didn’t go away.

The referral languished at the bottom of my handbag for a while, then in October when we went out for dinner to celebrate my 40th birthday, I asked my sister to feel it, as you do, and said, “What do you reckon?”

She looked at me with a flash of concern over her face and said, “I reckon you should book that scan.”

All along I have been reminded of how lucky I am. I have the “good” cancer. Detected early, treatable. I have the cancer that everyone throws money at. Yay me. I get it. I am lucky. So many others are not, I don’t for one second begin to compare my experience to anyone else’s.

What people don’t see with early breast cancer, especially the hormonal kind, is the treatment that continues long into the future. After the initial surgery and treatment (for me this was a mastectomy and chemotherapy), your oncologist eagerly starts you on hormone therapy.

I remember my oncologist swapping me from Tamoxifen to a combination of Zoladex implants and Exemestane. He said something like, “these will shut off your ovaries and this will stop any other hormones from attaching to cancer cells.”

Lovely. Let’s just shut off my ovaries, no biggie, right?

Then he adds, “but we will need to do a bone density test to get a baseline reading as this can cause bone loss and osteoporosis.”

Fantastic. Next, it will be, “Let’s just take your ovaries out, that way you can stop the implants, oh and we probably should consider a prophylactic mastectomy on your healthy breast.” Excellent, anything else?

The medication I am on now has given me crippling joint and muscle pain, high blood pressure, hot flushes, tinnitus, vertigo, cognitive vagueness, and night sweats. Some nights I don’t sleep at all. Like I’m actually awake all bloody night.

You go back to work and you look good. In fact, you look “really well”. That’s the extra eight kilos you’ve put on due to steroids, hormone therapy, and you know, menopause. For someone who has had the luxury of being relatively slim my entire life without any particular effort, this is pretty huge for me. I even need to get my rings re-sized.

For many reasons, I chose not to have immediate reconstruction. I may in time, I may not. Rocking a mono boob means that a lot of your tops don’t fit anymore. V necks are pretty well out. Your chicken fillet never quite matches your real boob. Add this to the weight gain and we have a real wardrobe dilemma.

I don’t mean this to be a whinge.

I am so happy to have access to wonderful doctors and medical treatment. I write this to remind everyone that although your friend or colleague who is in remission from early breast cancer may look well, she has probably been awake half the night in a lather of sweat. She probably has been hobbling around like an old lady with agonizing pain in her feet and hands for an hour before she got to work. She is probably feeling guilty for flying off the handle at her family in a completely unreasonable hormonal rage. She most likely literally has nothing to wear.

I think we need to remember when we are celebrating survival rates of early breast cancer, and waiving our pink ribbons around, that these survivors are not “back to normal”. Most are still in treatment, many indefinitely. Many are never able to return to work, at least not full time anyway. All are living with the constant fear of recurrence, which despite all of the treatment available, still stands at around 30 percent.

What can we do? Have the screening, do the tests, know your body. Ask questions, get second opinions and support cancer research.

And be aware that cancer survivors are often still cancer patients.

This article was republished with full permission from mamamia.com.au. You can read the original version, here.

If you liked this story, read more like it on mamamia.com.au:

What Does Cancer Look Like? The Pictures Survivor Briony Benjamin Wants You To See 
Four Women Diagnosed With Cancer Share The Sign That Told Them Something Wasn’t Right 
How Do You Live, Knowing You’ll Never Grow Old?

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