Today I would like to share a story, which really fascinated and inspired me. That night I could not sleep… I woke up at 3 a.m. and started writing a blog about Jo Taylor, a breast cancer survivor… and I believe, stories like hers cannot be left unnoticed.
A night before I have attended a cancer conference, where Jo shared her story of the disease and how her life changed after breast cancer diagnosis.
Jo was diagnosed with breast cancer when she was 38, married, having two very young children…As for every patient, such a diagnosis is a great shock! Nevertheless, Jo maintained and even empowered her active lifestyle: she is jogging, cycling and practicing yoga. Moreover, Jo rode a bike from Manchester to Blackpool (60 mile), while being on a chemotherapy treatment (Abraxane, Perjeta and Herceptin). Finally, she has created the “After Breast Cancer Diagnosis” web-site: http://www.abcdiagnosis.co.uk/, which provides additional information on the available treatments, surgeries and just supports women who faced the same problem as the author did.
You can read Jo’s full story at: http://www.abcdiagnosis.co.uk/index.php/about-me/2013-02-13-04-18-53
After a very inspiring talk at the conference, I had a chance to ask Jo questions about the life before and after breast cancer diagnosis.
Is there a family history of breast cancer?
No, no one in the family had ever had breast cancer.
At what stage you were initially diagnosed with breast cancer and how it was detected (e.g.: BSE, mammogram)?
I had found a lump by chance and went to my GP the next day. Mammogram and ultrasound with core biopsy confirmed.
How did you select a doctor and the surgery? This is a crucial for the treatment; can you give an advice of how to choose “wisely”?
My surgeon was chosen due to knowing someone who had the operation I wanted to have and she was at a hospital in the Manchester area. Seeing another patient’s good surgery was how I choose, but also knowing their credentials and experience in OncoPlastic surgery for breast cancer was also a key.
Did the doctor provide you with the information on the available treatment options or did he offer you what he believed is the most suitable for you? Was this information enough for you to make a decision or you had to do additional research?
The original Surgeon didn’t, but the one I choose did. I did the research mainly and he followed it up with what he offered.
Can you explain the treatment process in greater details? Did you have serious side effects caused by medicines?
I had a full mastectomy with all node clearance from under the arm. I had a Latissimus Dorsi muscle taken out of my back and placed still attached into the breast cavity. Due to not having enough muscle I had a small implant as well. After that I had: chemotherapy, radiotherapy, Herceptin and Zolodex, all with side effect. Chemo of course is a very toxic so yes, serious side effect with that in particular.
Was there any psychological help and support provided by NHS/ medical institution to accelerate the treatment process?
Sadly none offered, but had this further down the line.
You have always been a very active person: jogging, cycling and yoga are part of your life. Have your lifestyle changed since the diagnosis?
Not really, I think I have become even more active! I do have limitations so have to adapt with any issues I have.
Is there a collaboration between the patients and clinicians AND patients and pharma companies to tackle the disease? In case there is, how does it work? If not, do you believe anybody will benefit from such a network?
Haha! In a word no, they have a job to do and don’t want to waste their time talking to patients, but charities have patient voices where they can possibly advocate making changes. Lack of statistics, especially for secondary breast cancer is a real problem therefore we cannot create change or push pharma if we don’t have solid figures.
What could be the challenges of creating such a “team”?
The normal problems would arise, time, resources, money…
Have you been or thought of collaborating with SMEs (e.g.: medical communications) or bigger pharma companies to promote the disease awareness in the population? Do you believe sharing patients’ stories of overcoming/ coping with the disease could help people to better understand breast cancer and increase knowledge on the available treatment options?
I am involved with Salford University to share my own cancer story to nurses that are training. Unfortunately I do not have the time or resource to think about collaborations but I do have my own web site which people can freely access which provides knowledge and treatment options.
You are the founder of “After breast cancer diagnosis” web-site http://www.abcdiagnosis.co.uk/ which aims to support women by providing information on the treatment choice, available breast cancer surgeries and getting advice from those who went through it. You also give some tips on a diet and exercise. Are you doing it on your own or you have a support group? Can people join the team?
I do this on my own via social media, twitter and Facebook page. Anyone can chat or join into anything. I don’t have a forum, but hope people are motivated and possibly inspired by what I do.
The “after breast cancer” web-site is very comprehensive and now you plan to make an app. Do you want to include additional features to it?
Only a better way of having reconstruction photos on there with a search engine but a web based app so nothing stand alone.
What advice will you give to people recently diagnosed with breast cancer?
Live your life, enjoy and get out exercising to see the benefits it will have with your recovery physically as well as mentally.
Can people get in touch with you and if so, what is the best method to approach?
Connect with me on Twitter, Facebook or email email@example.com
Although I am an oncology scientist, unfortunately, I had never had a chance to meet or work with cancer patients. Is it a lack of education system or is it a way our society works? I believe the reason lies in the latter : everybody does what they were told to do without willing to go an extra mile?
This interview clearly confirmed the idea that there is a growing division between the patients, doctors and pharma companies… As we are all aiming to save and improve patients’ lives, advance diagnosis and help people to live longer, we need to establish a dialogue between these three groups of people as then, the biomedical scientists will get the feedback, how the treatments work, what are the drawbacks and what innovations are needed, while healthcare practitioners will get a deeper understanding of developing medicines and new treatment options.
Jo Taylor is a first patient, I have interviewed and I believe more people need to speak about their stories… as these are as different as us. Hopefully, this will help to cease the partition in the (medical and healthcare) society. After all, we have a single aim–
to BEAT CANCER!
Thank you very much for your time and as always, I wish you a lot of HEALTH!
P.S. I would be grateful if you would like to share YOUR story, and will contact me: firstname.lastname@example.org