In the UK, over 50,000 women are diagnosed with one of around 10 different types of breast cancer each year. Within those 10 different types, for one specific type there are again a number of different sub-types, and within every single diagnosis, there is a patient with a plethora of options and choices to be made.
“I have always been of the idea that knowledge is power, so I do a lot of my own research. Everyone’s experience is so different, and should be treated individually,” says Jo Taylor of ABC Diagnosis.
Jo has been living with breast cancer for over ten years, and has become one of the UK’s biggest advocates for patients with this type of cancer, providing support and information.
What to do when you are diagnosed with primary breast cancer?
Being armed with the right information when first diagnosed can make all the difference when undergoing surgery and the type of treatment plan a patient receives.
According to Jo, what most patients don’t realise when they are first diagnosed is that they have choices when it comes to their individual treatment plan, and the type of surgery they receive, at which hospital and by what surgeon, within reason. If you want a specific surgery and they don't provide it at your hospital, then you should be able to choose to have the surgery somewhere else.
A recent article confirms that people need to be informed on surgery choices.
Asking questions is fundamental, and researching what options are available is what Jo Taylor advocates for all patients.
Primary Breast Cancer: What are your surgery and treatment options?
Jo Taylor was first diagnosed with primary breast cancer in 2007 at 38 years old, married with two children, her youngest child was only 5 months old.
After researching her options for surgery, she discovered that individuals have a choice of hospitals and surgeons in the UK, as stated in the NHS Choices guidelines. Within a month of diagnosis, she’d had a mastectomy and full reconstruction surgery with a surgeon of her choice.
“I didn’t go with the original surgeon I was given. It was a complex surgery, which was 10 hours long. I had a better outcome choosing my own surgeon,” she said.
After her surgery, she had chemotherapy for six weeks and then radiotherapy five days a week, for four weeks. Which was followed by five years of hormone treatment and a chemically induced early onset of menopause.
“I was given a hormone treatment to kick-start an early menopause. Due to the hormones which were still raging around my body, my oncologist wanted to shut my ovaries down,” she said.
Jo was prescribed a drug which is only given for five years, called Tamoxifen. However, after doing some research she discovered there was a higher success rate of keeping the secondary cancer from reoccurring if a patient takes it for 10 years.
“So I discussed this with my Oncologist and we decided it was best for me to stay on the drug.”
What is secondary Breast Cancer?
It was in this time that Jo started her website ABC Diagnosis, which provides information for patients who have either primary or secondary breast cancer.
Jo loves the work she does as an advocate for breast cancer, helping people to understand that a one size fits all approach is not the answer when it comes to surgery and treatment.
“It’s not always the standard set routines that work for everyone.”
After 7 years of treatment for primary breast cancer, Jo found a lump in her neck and was re-diagnosed with secondary breast cancer.
“What people don’t realise is that secondary breast cancer does not come back in the breast, secondary breast cancer is when it has travelled somewhere else in your body and the main places it will metastasize to is in the bones, liver, lungs, lymph nodes and brain.”
Jo wanted the lumps in her neck removed, however her surgeon at the time did not recommend this surgery, so later when the lumps returned she had a second opinion.
Jo then underwent more surgery, this time to have the lymph nodes removed from her neck. She also had her sternum replaced, due to metastatic breast cancer found there. These surgeries were quite radical and not taken lightly.
“I have treatment every three weeks, which is forever. I use to have to go to the hospital in Manchester, which was a 50 mile round trip. The waiting rooms were full of people lining up for treatment, and this meant sometimes the inevitable delays. I now go to an outreach centre, 10 miles from my home. This is much more manageable.”
According to Jo, there’s so much going on behind the scenes, and her advocacy work is a way to get the message out to patients with breast cancer so they are armed with helpful information they need.
“It’s so important that those first diagnosed know that primary breast cancer will never kill you. And if you get secondary breast cancer people are starting to live a longer life, but it is important to have a great team behind you.”
“I now live with secondary cancer, which is incurable. It took time to get my head around that. Peer to peer support was so important for me. I found it majorly helpful to be able to talk to others who had secondary breast cancer, and share stories and information,” she said.
ABC Diagnosis has a range of reconstructive photos and resources, to help breast cancer patients make well-informed choices. There’s also a useful infographic, which helps patients recognize the symptoms of secondary breast cancer.