Secondary Breast Cancer: More than just an awareness day

Jackie, 51, was diagnosed with primary breast cancer in December 2002 aged 32.

At the time of her diagnosis, Jackie said she was sent away from her GP after being told she was “too young” to have breast cancer.

After battling back and fourth with her GP, Jackie eventually managed to get an appointment with the breast clinic where she was diagnosed with breast cancer that same day.

Jackie told the Globe: “I was very fortunate that I was able to go in for surgery the next day.

“I didn’t have a lot of time to process the diagnosis, but I was really pleased because it was either take the next day surgery or wait six weeks.”

After surgery, Jackie underwent chemotherapy and radiotherapy followed by having her ovaries removed meaning she would be unable to have children.

She said: “My cancer was completely oestrogen receptive, so the idea was to get as much oestrogen out of my body as possible.”

By the age of 33, Jackie went into a full medical menopause.

She said: “It was so difficult to make decisions about the future of having a family or not at that age.”

In 2009, Jackie’s treatment came to an end.

She said: “They wave you off into the world and say have a great life we don’t want to see you again but if you don’t feel too good then let us know.

“At the time I wasn’t given any sort of information or guidance, so I had no clue what I was meant to be looking for.”

In summer of 2018, Jackie began experiencing a pain in her right leg.

Jackie visited her GP and after X-rays was told she had arthritis in her knee.

She was referred to the physiotherapy team at Arrowe Park Hospital but noticed over time that nothing was improving.

“I couldn’t see why nothing was getting better,” she said.

Jackie then met a new doctor.

She said: “He watched me walk and examined me and told me he wasn’t sure that it was my knee and in fact he thought it was my hip.”

After looking at Jackie’s medical history, the doctor told Jackie she was going to be sent for an MRI scan.

Jackie said: “When I heard that he was going to send me for a scan it floored me."

When the results of the MRI scan came back, Jackie was told she had an eight and a half centimetre tumour in her right thigh bone.

She said: “I had been walking and exercising to improve the strength of a bone which was not far off breaking it was so eaten through with the cancer.”

Jackie was sent home on crutches and was told to not put any weight on the leg until she had been seen further.

She said: “I was told it was most likely going to be secondary breast cancer.”

Secondary breast cancer – also known as metastatic, advanced or stage IV breast cancer – is a cancer that has spread beyond the breast to other parts of the body.

She said: “The thought hadn’t crossed my mind that it could be cancer again because 18 years had passed since I first had it.

“To my mind I had had it, I had dealt with it, and it was gone but all of a sudden it’s back.”

In October 2019, Jackie underwent major surgery to have her hip joint and femur replaced which meant she was unable to walk without crutches or a wheelchair.

She said: “Even when I was told I had secondary breast cancer I wasn’t even aware of what it meant or what the impact would be for me.

“My only personal experience of cancer was primary and there was nobody to explain it to me that this was incurable.

“While it was made sure that I understood it, there was no one at that point to help me.”

Jackie said at the time of her second diagnosis she was in denial.

She said: “I was trying to get my head around what secondary cancer was while trying to have conversations about limb saving surgery knowing that there was a chance that I could wake up without a leg.”

Jackie turned to the internet to look for more information and found the secondary breast cancer charity, Make 2nds Count.

She said: “Their website is full of the most incredible, detailed, useful information that is written clearly and clinically about what secondary breast cancer is and what the warning signs are and what to look out for.”

“I know nothing is going to cure me and I know secondary breast cancer is most likely going to take my life but there’s nothing better than finding a community of people who are going through the same thing as you and can offer you support.”

Over 35,000 are said to be living with secondary breast cancer in the UK and 1,000 people die each month from the disease.

Despite this, according to new data from YouGov, 38% of the British population are unaware of secondary breast cancer, and 21% are aware of secondary breast cancer yet know nothing of the disease’s common signs and symptoms.

October 13 marks secondary breast cancer awareness day but charities like Make 2nds Count are calling for more than just an awareness day. 

Jackie is also calling for better education around the disease, she said: “Breast cancer is not a pink and fluffy disease. Breast cancer involves mutilating surgeries.

“It’s such a cruel disease and it requires more than just a single awareness day.

“The only thing we can do is fight to be heard and make more people aware of secondary breast cancer.”

On the September 26, 20 women who have secondary terminal breast cancer met in Golden Gloves Gym in Liverpool from across the UK to create an awareness campaign image to portray the consensus of being treated ‘second best’ for the Charity Make 2nds Count. 

Jackie, who was one of the models, said the idea of the photoshoot was something completely out of her comfort zone.

She said: “I was so nervous, but I met the most amazing group of people. It was the most wonderful day filled with joy and laughter and fun and it made me feel so alive.

“I feel lucky to be here still at the age of 51 and I met ladies there that were the age I was when I was first diagnosed, and they’ve got secondary breast cancer.

“They have young families and don’t know if they will they get to see their children go through school, go to university or get married.

“It feels so wrong and unfair that young people have to go through this when if there was more education around it then they potentially could have been picked up sooner.

“We need drugs that are going to keep us alive for longer so instead of becoming a death sentence it becomes something we can live with for many years.”

Jackie said for many secondary breast cancer patients living from scan to scan is the reality of living with the disease.

she said: “Although I currently feel fine, I get so anxious when my next scan is due because I know that scan can see inside my body and tell me what is actually happening and sometimes you don’t think there’s anything wrong when in actual fact the cancer is on the move and that in itself is really scary.

“Every three months everything pauses for a while until you get those results and then you move on. It’s a difficult and draining way to live a life.”

If you have been impacted by anything discussed in this article please visit https://www.make2ndscount.co.uk/ for more information and support.