"If something doesn't feel right, do not leave it"

Wednesday 20 October 2021

An islander with incurable breast cancer is calling on others to "advocate" for their health if they feel something is not right.

Rose Shepherd (50) was diagnosed with secondary breast cancer in December 2017, after 16 years in remission.

She was first diagnosed with breast cancer nearly 20 years ago at the age of 30. 

At the time, she could feel a lump in her breast. While a mammogram came back clear, an ultrasound however revealed three lumps, which Rose explained sometimes happens as breast tissue is denser in younger people meaning that a mammogram is not always conclusive.

Pictured: Rose was diagnosed with secondary breast cancer in December 2017.

After undergoing surgery and radiotherapy, Rose was given the ‘all clear’ five years later. 

In December 2017, years after she had been discharged from the breast clinic, Rose started suffering from pain in her lower back, which she initially attributed to her fibromyalgia. “I thought it was flare-ups because fibromyalgia causes a lot of pain,” she said. 

When she went to her GP because she believed she had a hernia, Rose was told to get a MRI scan, which revealed five cancerous tumours in her spine. 

She found out her original cancer had metastasized and was told she had ‘stage four cancer’, which she feels many people do not understand. 

“I think there is a lack of education,” she said. “When you tell people you have secondary, metastatic or stage four cancer, so many people do not get it. 

“I was diagnosed nearly four years ago, and I still get two things. One is, people tell you, ‘You’ve beaten it once, you can beat it again’, which is really frustrating. The other is, people ask you when you will finish our treatment and I have to tell them, ‘No, I will be on treatment for the rest of my life’.”

Pictured: Rose said people do not understand what secondary, metastatic or stage four cancer is.

To raise more awareness, Rose has this year started being more vocal about the condition in public posts she has shared to her Facebook page. 

“I would like people to know that once you have a stage four diagnosis, it is an incurable disease, you will be on treatment for the rest of our life,” she said. “There is never going to be an end date when you will be told you can get on with your life. You are always going to have doctor’s visits, blood tests, scans… your life changes forever. It’s very different from a primary breast cancer.”

With drugs only working for a certain period of time, Rose is calling for more research into stage four cancer so that more treatments can be found.

“When a treatment stops working, you get onto another one, and when that stops working you get onto another one, until there is no other treatment, and you die, which is why it’s important that there is more research and more drugs.

“I would encourage people when they are thinking of donating to a charity to donate to a cancer charity or a stage four cancer charity.” 

Pictured: Rose would like to see a support group designed for islanders suffering from secondary breast cancer to be set up.

She is also calling for a specific support group for islanders suffering from secondary breast cancer to be set up, as there currently is nothing designed for them locally.

“I found an online group called ‘Stage 4 Deserves More’, which is run by my wonderful friend Gemma Ellis, a 30-year-woman with two young daughter who has stage four cancer,” Rose said.

“The experience for me was a very lonely one, I did not know anyone else going through the same thing as me. It helped me so much to be able to reach out to people who really understand and really get what you are going through. There is 800 of us now.”

Rose also encouraged islanders to “advocate” for their own health and seek help if they don’t feel well and called for more awareness about the statistics around secondary breast cancer and its warning signs – headaches, tiredness, and pain, among other symptoms.

Pictured: "My advice to people is, be your own advocate, if you feel something’s wrong," Rose said.

“30% of those ladies and gentlemen - because men have breast cancer too - will go on to have stage four cancer,” she said.

“I have spoken to so many ladies who are not told of the warning signs. You are not told of the possibility of it coming back. I believe that every woman or man should have an in-depth MRI scan at least every year, because a mammogram will only pick up what’s in the breast. 

“My advice to people is, be your own advocate. If you feel something’s wrong, if you have a gut feeling, push and push. Nobody knows our bodies better than ourselves. If something does not feel right, just keep pushing, it’s your body, it’s your life, it’s your choice.

“I am so passionate about this because it could be the different between a curative treatment and straight to stage four. Listen to your body, be your own advocate, if something does not feel right, do not leave it.”