Pathological Panic

You know it’s not good news when the doctor that tells you about your cancer diagnosis offers to ring your GP and make an appointment for you. I remember her saying, “This is a more unusual and aggressive type of breast cancer. You need to move quickly. Not as in ‘days’ but certainly in the next two weeks.’ Then they give you a dumbed down letter telling you it’s cancer and sealed envelopes for your GP and surgeon. Of course, you open them.

Here’s the diagnosis from my pathology report:

DIAGNOSIS

RIGHT BREAST 10 O’CLOCK 10 CM FROM NIPPLE

– Poorly differentiated adenocarcinoma

– Possibilities include a triple negative primary carcinoma of the breast or secondary adenocarcinoma

Okay, first up it’s my LEFT breast. Thinking back to the biopsy procedure I remember they’d had a technician (cytologist?) come up from pathology to be present while they took the sample. She came into the waiting room, didn’t say hello and sat at the far end with her eyes down. I’m guessing they’d already told her I had cancer. Everything about her demeanour said ‘I went into pathology to avoid contact with humans’. When we walked into the room to have the biopsy done I introduced myself and tried to make her smile. Just before they started the procedure, when her back was to me, I said, ‘Make sure you’ve got the right breast….and by that I mean the correct breast.’  It’s my nature to try to be funny, or at least light hearted in stressful situations. Of course, I was on a table with my LEFT breast exposed so there’s really no excuse.

And at this point in time, having the wrong beast on the pathology was the least of my worries. I knew I was the only person that day to have five biopsies so I was pretty sure this was my report. Most worrying was the possibility that the cancer was secondary. The doctor giving me the news reassured us that this was ‘unlikely’ but you can’t help worrying.

For those that are interested in the detail, here’s the rest of the relevant pathology. Feel free to skip over this bit.

CLINICAL

Cluster of suspicious nodules right breast 10 o’clock

1  10cm – corex3

2  8cm FN – FNA x 2

3  6cm FN – FNA x 2

(That cm measurement is the distance from my nipple, not the size of the nodules. At the time they told be the largest one was ‘about 9mm’)

MICROSCOPIC

The aspirate from both sides ….contain numerous loosely cohesive sheets of cells.

Single intact cells are also present in the background.

Bare bipolar nuclei are absent.

The features are consistent with carcinoma.

Sections of both cores show infiltrating single cells and cords of cells which are poorly differentiated. They are surrounded by dense sclerosis.

Immunoperoxidase stains:

Positive: AE1/AE3, e-cadherin, CK5/6 (stains the cells not the myoepithelial layer), Cal9-9, CK19 and CK7

Negative: Oestrogen receptor, progesterone receptor, TTF-1, napsin A, CA125, chromogranin, synaptophysin and CK20.

The report says that the HER-2 result will follow but the triple negative diagnosis can’t be made without a negative HER-2 so we assumed that. It was later confirmed.

BUT WHAT DOES IT ALL MEAN?

Don’t you just love Google. It’s possible to type in bits of your pathology report, along with words like ‘cancer test’ or ‘pathology test’ and get a reasonable idea of what most of this means. Asking doctors is useful, but they tend to give general responses like, “Those results refer to different types of tests they do on the cells in order to determine whether or not it’s cancer, and what type of cancer it is.”

I was also given a great little book by the counsellor and BreastScreen when I received my diagnosis. It’s called Guide for Women With Early Breast Cancer. It’s government funded, and prepared by the National Breast and Ovarian Cancer Centre. If you’ve recently been diagnosed with breast cancer this is a wonderful resource. It’s also included in a brilliant package you can get from Breast Cancer Network Australia at http://www.nbca.org.au.

Using my computer and my book I was able to figure out the following:

‘Poorly differentiated’ refers to how different the cells are from your normal cells. The less like normal cells, the more advanced/aggressive the cancer. ‘Poorly differentiated’ is not a good thing.

In my case, my cancer is defined by the things that it isn’t. The most common forms of breast cancer have receptors on the cancer cells. Many of the modern cancer drugs have been designed to target these receptors. I don’t have receptors for oestrogen, progesterone or HER-2 (a potein that affects how quickly cells divide). Missing all three receptors means it’s called ‘triple negative’.

So none of the new drugs were going to be any use to me.

When you search ‘triple negative breast cancer’ you discover that it’s rare, more aggressive and compared to other breast cancers it has a poorer prognosis, which is a polite way of saying it’s more likely to kill you. About here the panic started to set in.

I wanted ductal carcinoma in situ.

I wanted my left breast surgically removed immediately.

I wanted to wake up and discover it had all been a nightmare.

Most of all, I wanted an appointment with a surgeon TOMORROW. Of course, you can never get that. The soonest appointment I could get, even with my beautiful husband pleading to the receptionist, was eight days away.

 

 

 

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In the beginning

On June the 19th, 2013, I had my first free mammogram with BreastScreen NSW at Gosford Hospital. At 51, I’d been entitled to a free test for over a year. The month before, while I was travelling with my daughter, I’d noticed a dull pain in my left breast. Nothing much. I thought I might have strained a muscle lifting my luggage. When the pain kept recurring I commented to my husband that I should probably have it checked, but I wasn’t particularly worried about it. When the letter came in the mail offering me a free breast screen I thought it was good timing.

On the Wednesday the 19th of June, 2013, I turned up at BreastScreen and had a pleasant afternoon with the very cheerful, friendly staff. I’d had a mammogram several years before after developing mastitis while I was breast feeding and the experience hadn’t been pleasant. In contrast, the technician at BreastScreen was kind, friendly, patient and very good at putting me at ease.  My breasts are fairly large and my breast tissue extends under my arms so a mammogram was never going to be comfortable, but this lovely woman took time to make sure I was properly positioned in the machine. I can remember her repositioning my left breast when she wasn’t happy.  Some days you just get lucky.

When they send you a letter asking you to come back to BreastScreen for further tests they include a brochure that’s meant to be reassuring; 90% of people called back don’t have breast cancer. If you know anything about maths, you quickly figure out that you’ve got one chance in 10 of having it.  I still wasn’t worried. I assumed they’d found some odd looking tissue thanks to my previous mastitis. Neither of my breasts felt lumpy.

The first thing that struck me when I saw the slide that resulted in my call back was how lucky I’d been. There was a little white star right up against the edge of the slide for my left breast. If the technician had gone with the first set up for my mammogram it would have been missed. Thanks to her professionalism and her commitment to taking the best possible image, she’d captured a triple negative breast cancer at 10 o’clock. At the time of writing I’m still fighting this cancer, but whatever chance I have at a longer life I owe to this wonderful woman. If she’d been rushed or cared less I would now be walking around with a highly aggressive cancer and a negative test from BreastScreen, oblivious to the danger until the cancer had become obvious.

The rest of my call back at BreastScreen involved watching the joyful 90% emerge from their further tests with big smiles and sighs of relief. When they moved me out of the queue and saved me for last I had a fair idea I was part of the 10%. The ultrasound showed three tumours joined together like a string of fuzzy beads. The doctor’s face said ‘cancer’ even though she was non-committal. Three fine needle and two core biopsies later and I spent and anxious week waiting for the news I knew was coming.

On Wednesday the 10th of July my husband and I were informed that I had a ‘more unusual and aggressive’ triple negative breast cancer. I’d never heard of it. I didn’t even know there were different types of breast cancer. It was the start of a journey that I hope ends with my full recovery and a long and happy life. Welcome to my journey.