Jo Taylor was diagnosed in February 2014 with metastatic breast cancer. Since then, her mission has been to give primary and metastatic breast cancer patients informed choices with information and up-to-date news on treatments, breast surgeries, consultants, hospitals and useful links.
1,430 people die every day of metastatic breast cancer worldwide and 1,000 die each month in the UK. As Jo has said, “Let’s help to make awareness and get changes”.
Jo, you were diagnosed with metastatic breast cancer. Can you please tell us about your breast cancer history including your reconstruction decision?
I was diagnosed with primary breast cancer nearly 9 years ago in February 2007 and decided to have an LD (Latissimus Dorsi) flap which was immediate reconstruction, therefore, mastectomy and reconstruction done at the same time. Also had skin saving surgery so the breast tissue was removed and the muscle and a small implant placed inside the breast cavity. I didn’t keep the nipple.
Everything was fine until February 2014 when I was re diagnosed with metastatic breast cancer. I am now on ‘maintenance’ treatment which means I have drugs every 3 weeks forever. Scans every 3 months. This is the life of a metastatic breast cancer patient.
You created a website called After Breast Cancer Diagnosis. Why is this website so important to you and how can it impact so many other women?
I felt that I didn’t have the right choice of reconstruction with my original surgeon and hospital. Therefore I had to find a surgeon who would do what I had seen could be done. Luckily I found someone within my location on the National Health Service (NHS) to be able to do this. I wanted women to know that they had a choice. I had met many women who weren’t given the choice and didn’t feel right for them.
No matter what the choice is whether a full mastectomy without reconstruction or with reconstruction you have to have options. It can affect so many different aspects of your life if you don’t feel you have the right information to help you do this. No one else provides the kind of information I provide so the web site is quite unique.
Can you tell us the differences between the healthcare system in the UK versus the US regarding data protection and sharing? How does this impact cancer awareness concerning the latest cancer technology?
In the UK, if you are a citizen, you are entitled to free healthcare. There are quite strict protocols in the UK for data sharing and protection. I agree with it in a way but then sharing, say photos of reconstructions from a breast surgeon, are very limited. This obviously makes decisions harder for patients and I don’t think anyone should go into surgery based on trust.
Social media is all about sharing information and patients are beginning to have more say in their care and aftercare than they used to due to this sharing. Healthcare has changed in the last few years due to social media and more professionals in the NHS are now seeing the benefits of actually sharing knowledge, information and talking to patients.
What are your future initiatives to promote greater awareness of breast cancer reconstruction and the choices that women have?
I am going to be creating a web based app for reconstruction. It’s a big task but feel it needs to be done to provide this level of information for patients. I have already talked to numerous professionals within the NHS about this who are very open to working with me to provide this.
Also, I am raising awareness of metastatic breast cancer. I am campaigning with the help of my MP for better data & information to help patients eventually access better drugs and treatments to increase the quality of life.
Exercise and diet is also big on my agenda for mental and physical health during and after cancer. It’s something I do and hope people will also start their own exercise regimes.
What message do you want to convey to our readers who are considering breast reconstruction?
Read about your options, see photographs and talk to other women who have been through it. It is not a ‘boob job’. It is hard mentally and physically dealing with reconstruction and breast cancer and everything else physically and mentally you go through. Recovery can be long and surgeries seem never ending. Weigh up all options what is best for you whether reconstruction or not – you have a choice.
How can people contact you on social media and what are your sources for information that we can read?
My web site has lots of information, links and information and I have similar news and info being posted on Twitter and my Facebook page.
I also have a blog on my website where you can read about my ongoing story as well as other thoughts on there. I hope you find it interesting!
Also, please follow the Breast Cancer Chat Worldwide – #BCCWW every Tuesday night 9:00-10:00 PM GMT (Greenwich Mean Time). In the U.S., it is 4:00PM EST/ 3:00PM CST/ 2:00PM MST/ 1:00PM PST.