Woman warns of 'invisible' breast cancer after getting false all-clear

03/10/2023

Attending scheduled breast cancer screenings is a vital factor in catching the disease as early as possible.

However, as Susan Michaelis, 60, discovered they aren’t always failsafe.

When the pilot-turned-aviation-safety-consultant had noticed a small spot of what appeared to be thickened skin on her left breast a decade ago, she visited her doctor, who said it was nothing to worry about, but to keep an eye on any changes.

‘It wasn’t a lump, it was more like a blemish, about a millimetre across,’ said Susan, from Horsham, West Sussex.

Shortly after, she received an invitation for a routine NHS check-up (which women are offered every three years from around the age of 50) and was given the all-clear.

Despite X-ray images showing no abnormalities, over the next few weeks Susan began to feel uneasy. She noticed the blemish had doubled in size and turned a red colour, prompting her to go back to the surgery for further testing.

After a biopsy was scheduled for the following day, Susan waited to hear back – and the call she dreaded came just three days later, when doctors asked to see her about the results.

Susan recalled: ‘I went in and was told, “you have invasive lobular breast cancer”. I replied, “lobular what?”‘

Breast cancer symptoms

The first symptom of breast cancer that most women notice is a lump or an area of thickened tissue in their breast.

You should see a GP if you notice any of the following:

a new lump or area of thickened tissue in either breast that was not there before
a change in the size or shape of one or both breasts
a discharge of fluid from either of your nipples
a lump or swelling in either of your armpits
a change in the look or feel of your skin, such as puckering or dimpling, a rash or redness
a rash (like eczema), crusting, scaly or itchy skin or redness on or around your nipple
a change in the appearance of your nipple, such as becoming sunken into your breast

Via NHS.

Lobular cancer begins in the breast milk glands (lobules) and often shows no signs or symptoms in the early stages, making it almost ‘invisible’.

As it spreads, it is less likely than other types of cancer to form a defined lump, instead growing in single-file strands.

‘The doctor explained that lobular breast cancer doesn’t usually show up on mammograms because, as he put it, it’s like a spider’s web,’ said Susan. ‘It slithers through tissue and doesn’t generally form a lump.’

Her vigilance saved her life. While lumps are a common signifier of breast cancer, other symptoms include thickening in part of the breast, new areas of fullness or swelling in the breast, changes in the texture or appearance of the skin over the breast, such as dimpling or thickening, or a newly inverted nipple.

Susan added: ‘That’s the scary thing. Women tend to think of a lump when they are looking for breast cancer, but lobular cancer creeps through the tissues.

‘Sometimes the shape of the breast changes or something just doesn’t feel right.’

Susan was told by her oncologist that chemotherapy and some other drugs suitable for ductal breast cancer may not be effective against the lobular form, so she was offered radiotherapy followed by tamoxifen, a hormonal therapy.

However, after being warned there was a chance the disease may return, she decided to to undergo a double mastectomy.

The operation revealed that although a previous MRI had shown a 2.5 centimetre network of cancerous cells it was actually seven centimetres across.

Following her treatment, Susan remained cancer-free for three years. Then she noticed a new spot in 2016 and had three operations to get rid of every last cell. She was also put on a hormonal therapy called an aromatase inhibitor, which kept her cancer in check until 2021, when it returned again.

‘When Covid hit, we took up walking and hit country footpaths,’ she explained. ‘We’d been out for a walk and my hip was sore, so I went to the doctor.’

Thanks to her private medical insurance, Susan was able to keep an eye on tumour markers, but the diagnosis was confirmed with a whole body MRI scan discovered that she now has uncurable secondary cancer in her pelvis and spine.

‘This will kill me,’ she said, bluntly. ‘I’ve always known the limitations with lobular, but it’s only when it went to my bones that I really realised there is no specific treatment, it’s a one size fits all approach. And that doesn’t seem okay to me.’

How to check for signs of breast cancer

CoppaFeel! offers these simple steps on how to check your own chest for signs of cancer.

Look

Look at your boobs, pecs or chest.
Look at the area from your armpit, across and beneath your boobs, pecs or chest, and up to your collarbone.

Be aware of any changes in size, outline or shape and changes in skin such as puckering or dimpling.

Feel

Feel each of your boobs, pecs or chest.
Feel the area from your armpit, across and beneath your boobs, pecs or chest, and up to your collarbone.

Be aware of any changes in skin such as puckering or dimpling, or any lumps, bumps or skin thickening which are different from the opposite side.

Notice your nipples

Look at each of your nipples.

Be aware of any nipple discharge that’s not milky, any bleeding from the nipple, any rash or crusting on or around your nipple area that doesn’t heal easily and any change in the position of your nipple

While there’s no doubt that mammograms provide life-saving cancer screening for thousands of women every year, Susan’s story highlights how there’s several ways we need to be checking for cancer.

In a bid to improve treatments for those with lobular cancer, Susan and her husband Tristan, a former pilot and filmmaker, have since launched the Lobular Moon Shot Project.

The couple aim to raise funding for research and increase public knowledge over the different ways it shows up. Around 80% of breast cancer cases are ductal, but many are unaware of the existence – and specific symptoms – of lobular cancer despite it accounting for roughly 15% of diagnoses.

‘We don’t have a specific treatment,’ explained Susan. ‘It doesn’t usually show up on mammograms and generally we’re diagnosed at a later stage – this has to change. To get people better outcomes we need specific treatments, and that will only come from specific research into lobular.’

Now out of suitable hormonal treatments, she is currently on oral chemotherapy to slow progression and buy her more time. Yet new discoveries have been made as a result of the Institute of Cancer Research (which The Lobular Moon Shot Project helps fund) that give Susan hope.

It’ll take an estimated £20million for scientists to find the solutions needed for those with lobular breast cancer, but Susan is confident.

‘We can change this, but we have to do the work,’ she said. ‘We have to make this happen.’

For more information, to donate, or to see a film Tristan made about Susan, visit the Lobular Moon Shot website.

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