Ali’s story
I discovered a lump in my left breast in early 2000. At that time, we were living in a village 10 miles from Cambridge. I went to my GP who quickly referred me to the hospital, and I was diagnosed with a fast growing (grade 3) Oestrogen receptor (ER) negative ductal carcinoma. This came as a complete shock as there was no history of breast cancer in my family although my mother had died of uterine cancer aged 54. It was hard telling my children, then aged 11 and 9, and my father.
I was to have a lumpectomy at Addenbrookes Hospital in Cambridge. They told me about a trial that was taking place there, whereby a sentinel node biopsy would be taken to see if the cancer had spread instead of removing all my lymph nodes. I really wanted to be a participant as I am left handed and play a lot of tennis and I was concerned that having all my lymph nodes removed would affect my ability to play. I asked my son’s tennis coach to teach me to play right handed but thankfully his coaching skills were not required, as when I went to have my operation in March, I found out that I was on the trial.
I was to have 6 rounds of a combination of two chemotherapy drugs, Adriamycin and Cyclophosphamide (AC chemotherapy), 3 weeks apart. A potential side effect of AC chemotherapy is that it can affect the number of white blood cells in the body. Indeed, after my first session of chemotherapy it was found that I had less than the healthy count of the white blood cell neutrophil. Because of my diagnosis of Neutropenia, I had to be admitted to hospital for about a week. I was discharged only to go back the next day for my second round of chemotherapy.
The upside to spending a week in hospital was that all my hair fell out there and not at home, so it was one less thing for me to think about!
After the second round of chemotherapy I became neutropenic again, so I was given a two-week course of Filgastrim to stimulate my body to increase neutrophil production. This meant a daily injection in my stomach, which thankfully my husband helped me with. However, after my fifth round of chemotherapy I required a blood transfusion.
In July I had 3 weeks of daily radiotherapy which was a doddle compared to the chemotherapy! Throughout my treatment I wanted to be open and honest with my children, so they came along to one of my chemotherapy sessions and one of my radiotherapy sessions. The staff at the hospital were great and explained everything to them.
I had regular check-ups for the next 5 years before going back onto the usual 3 yearly mammograms. It was during a routine mammogram 12 years later that a lump was found, this time in my right breast and the cancer was ER Positive. I was devastated! I thought, I’ve done this already, I can’t go through it again. It started me thinking, was this bad luck or was there something else going on?
In August 2012 I had another lumpectomy, followed by 6 rounds of docetaxel chemotherapy 3 weeks apart and then 4 weeks of daily radiotherapy. They were acutely aware that I became neutropenic during my previous chemotherapy treatment, so they gave me a smaller dose of Docexatel and monitored me closely for any symptoms suggesting that I was becoming neutropenic again. Because this cancer was ER positive, I was put on a 5-year course of Arimidex which decreases the amount of oestrogen in the body. My family was a great support to me as I went through my treatment.
I asked to be referred to the genetic counselling team to see if I had a genetic predisposition to breast cancer. I filled in a form about my family history and gave a blood sample in early 2013.
I received confirmation that I have the BRCA2 gene mutation over the phone in March 2013. Although it was a result I was expecting, it was still a shock knowing this had implications for my whole family. I furnished them with all the information I had, and some have chosen to take it further while some have not.
My male cousin found that he has inherited the gene and he is being closely monitored.
By 2014, my daughter was living in London and visited the genetic counsellors there to be tested. It was a difficult time as we had both convinced ourselves that she would carry the gene mutation too. We were so very delighted when we found that she does not have a genetic risk.
A double mastectomy was one of the risk-reducing options available to me. This was such a difficult dilemma for me as I really did not want to go through another operation, let alone a double mastectomy, so I tried to make myself as well informed as possible, whist getting back to normal life. It was clear that I would not be able to have a reconstruction using just implants due to the damage that the radiotherapy had caused to my skin. A previous abdominal surgery meant that using tissue from my tummy wasn’t an option either. They could use unradiated tissue from my back but that would cause mobility issues that would interfere with my tennis game.
The hospital put me in touch with a lady at least 10 years younger than myself who had been through a double mastectomy. I had a long chat with her which really helped me to make up my mind, I decided to go ahead, and my operation was planned for February 2015. I was operated on by two surgeons which halved the time that I was under general anaesthetic, allowing me to make a quicker recovery.
I am now participating in an Epidemiological Study of Familial Breast Cancer, which involves filling in questionnaires and giving a blood sample when required. The study aims to increase understanding of the causes of breast cancer in women with a family history of the disease.
In addition to participating in this ongoing study, I really wanted to volunteer for a charity funding research into better treatments and earlier detection of breast cancer. After an internet search I found Against Breast Cancer and I am glad I did. Everyone is so friendly, and they make me feel very welcome. I volunteer within the sports and challenges department which is a great fit for me, the work is interesting, and I get to chat about sport with Richard too! I volunteered at the Breast Walk Ever 2018 and I’m planning to get a team together for 2019 to help raise more money for the cause.