As Voices, we all want to help out with research
Janet was starting to adjust to life after losing her husband during Covid when she was diagnosed with breast cancer in 2021. After finding out about Breast Cancer Now during her treatment, she chose to sign up as a Voice to help with research into breast cancer.
Can you tell us about your diagnosis?
I was diagnosed with breast cancer in 2021 after losing my husband during the pandemic. When I had the first round of tests and biopsies, I didn’t need to wait long for the official results.
After talking with the doctor, they gave me information leaflets – this is when Breast Cancer Now came into my life! I was very impressed with the support Breast Cancer Now offered and I signed up for everything I could.
How did you feel about your treatment?
My doctor said I would have a on one side and they would remove the . Afterwards, we would see whether I needed as well.
I knew it would be difficult going through this without the support of my husband, but I knew I was lucky that I wasn’t young and needing to worry about work or childcare.
I had my treatment at Poole Hospital, and at my first appointment with the surgeon she said it was ‘treatable and curable’. It really felt like we were on a positive path.
Glossary term
Chemotherapy
Treatment aimed at destroying cancer cells using anti-cancer drugs.
Glossary term
Lymph nodes
Also known as lymph glands. Small oval-shaped structures found in clusters throughout the lymphatic system, for example under the arm (axilla).
Glossary term
Mastectomy
This is a type of surgery in which all of the breast tissue is removed, including the nipple.
How was your recovery?
After my operation, I made sure I did the exercises in the Breast Cancer Now leaflet and, on the whole, recovered very well.
I returned to the surgeon for the all-clear, but she said I would still need to have chemotherapy and to make sure the cancer was gone. My aunt had breast cancer, and hers returned after her mastectomy, so I understood the importance of prevention.
Glossary term
Radiotherapy
The use of high energy x-rays to destroy cancer cells.
Can you tell us about your experience of chemotherapy?
Losing my hair wasn’t the worst part of chemotherapy. It was worse that everything tasted awful! The days could feel quite long without the comfort of tea, coffee or my favourite food. I had infusions every 6 months and, after 2 years, appeared.
I’m currently on 5 years of and take calcium tablets to counteract the loss of oestrogen.
Glossary term
Anastrozole
A hormone therapy and one of a group of drugs called aromatase inhibitors, used to treat breast cancer.
Glossary term
Lymphoedema
Swelling of the arm, hand, chest or breast area caused by a build-up of lymph fluid in the surface tissues of the body. It can occur as a result of damage to the lymphatic system, for example because of surgery or radiotherapy to the lymph nodes under the arm and surrounding area.
What made you want to become a Voice?
I had been following Breast Cancer Now online throughout this time and joining Breast Cancer Voices seemed to be an obvious choice for me. It’s a great way to keep up with what the charity does and contribute to different projects. I always look to see the latest projects and if they apply to me.
I enjoy every project I take part in, and I like chatting with other women from across the country and hearing their different stories and experiences.
Can you tell us what you’ve been involved with as a Voice?
As Voices, we all want to help out with research and are happy to get involved where we can.
I took part in one project about chemotherapy doses - I had no idea that weighing patients for the correct dose of chemotherapy was not necessarily accurate.
In an online forum we heard about an idea for 3D mapping of the patient's body in some sort of science fiction box! We all thought it a good idea and said we would be happy to do that for our treatment.
Another time we evaluated possible images for leaflets for Breast Cancer Now. We agreed that a worried looking middle-aged woman looking out over a lake was not reassuring and certainly would not resonate with younger women. We suggested a young woman looking hopeful chatting to a friendly person.
In another forum, researchers mentioned that they were not allowed to take biopsies purely for research. We all said we would be happy to consent to that.
Do you have any tips for anyone about to start their treatment?
During chemo, you are given which you gradually decrease at home. After the steroids wear off, that’s when you feel worse. If you can have family or friends around to support you during this period, that’s very helpful!
I was on a 3-week chemo cycle, meaning I had a break from the chemo during week 3, and I would see my oncologist during this week. I felt great during the breaks, but it’s important to tell your doctor if you felt terrible in the 2 weeks of treatment before. They might adjust the dose to help you feel a bit better.
After treatment, try to get on the move as soon as possible. It’s important to look after our bones, stretch our chest and keep lymphoedema at bay.
This is a personal one, but if you lose your hair, don’t be afraid to explore different options. I went with bright turbans and dangly earrings rather than a wig, and I also knitted colourful hats to be chic in winter!
Glossary term
Steroids
May be given as part of cancer treatment, for example to help with side effects of chemotherapy such as nausea and vomiting, or to control some symptoms caused by cancer.
Become a Voice
Like Janet, you can become a Voice and create positive change for people affected by breast cancer.