I was diagnosed with Inflammatory Breast Cancer (IBC) in May 2013 at age 46. This is a rare and very aggressive cancer which does not present the same as other breast cancers in that there is often no lump. Many women are mis-diagnosed by GP’s (because one of the symptoms is redness) as having Mastitis or some other infection and given antibiotics. I went to my doctor 3 times before she referred me to the Breast care team. I was lucky and managed to get diagnosed early (stage 3 is the earliest diagnosis for IBC) but many others with this type of cancer are already Stage 4 (terminal) by the time they are diagnosed. My cancer was ER + which means it was feeding on the female hormones present in my body.
I was treated at Burnley General Hospital and received Neoadjuvant chemotherapy before a radical mastectomy (non- skin sparing) of my right breast and full lymph node clearance of the surrounding area and underarm. I then had radiotherapy at the specialist unit at Preston Royal.
Following treatment I was prescribed Tamoxifen for at least 10 years as a preventative measure this was because of my ER+ status and because I was pre-menopause. One of the side effects of this drug is that you experience an early menopause and last year I was moved to a different drug as I have now gone through this stage. After Chemo my eyebrows never grew back and my eyelashes are virtually non- existent. The drugs I take have caused my hair to thin so I now keep it short.
I also developed Lymphoedema in my right arm as a result of the clearance of my nodes and I have to wear a full compression sleeve and glove to prevent my arm swelling with the build up of fluid. This can get very uncomfortable in the hot summer months.
When I was diagnosed it was a big shock. My GP had been telling me that the changes I was experiencing were down to hormones because I was pre-menopausal and there was nothing to worry about. She referred me after my 3rd visit as a precaution and to set my mind at rest. On the day of my appointment at the hospital for screening by the Breast care team I went alone dressed ready for work after the appointment expecting that I would be reassured nothing was wrong. I was initially assessed by a Surgeon in the Breast Care team who upon initial examination was also convinced my symptoms were hormonal. She was about to send me home when she noticed a small red area on my breast and asked what it was. I explained that it came and went and I wasn’t sure why. She decided to send me for a mammogram just as a precaution but reassured me she felt there was nothing to worry about. I did as instructed and presented in the department for my mammogram after this I was asked to take a seat in the waiting room. I was then shown into another small consulting room and the Doctor explained she would be doing an ultrasound scan on my breast. There was another nurse in the room who sat next to the Doctor looking at the monitor. They were smiling and making small talk with me but as the Doctor was scanning they went very quiet and exchanged concerned glances. The Doctor then said she had seen some masses and turned the monitor so I could see. She pointed out three areas that appeared brighter that the rest of the picture. She said she needed to take biopsies of these areas to identify what they were. She asked if she could proceed now or would I prefer to come back another day. I was by now very worried but I said I wanted her to do this now and get it over with. The procedure was uncomfortable as one of the masses was deep inside the breast. It was a small room and I became very hot as it was springtime and sunny outside. After the procedure I was told to wait in the waiting room and given an aftercare leaflet to read. T waiting room had filled up and I remember sitting at a table on my own but noticing my hands were shaking and I was very anxious. A nurse popped her head round the door and asked me to follow her into another small lounge area where she told me to sit and asked if I would like a cup of tea. She told me to take some time to drink my tea and ‘gather my composure’ before I went back to the department where the surgeon would see me about the results of the scan. I made my way back as instructed and was called into a consulting room. I could hear the Surgeon and a nurse talking to someone in the room next door. After the patient left I then heard the nurse advise the Surgeon I was in the next room and they had the results. They lowered their voices but I clearly heard the surgeon ask if I was on my own. When she came into my room her expression had changed from the smile she had worn earlier to one that I can only describe as that used for telling you someone has died. She told me that they believed what they had found was cancer. I burst into tears and all I could think about was my children two of them still very young. I pulled myself together and the surgeon asked if I had any questions. I did ask her what happens next but to be honest I’m not sure I was taking anything in. I remember she tried to reassure me that until the biopsy result was back they would not be able to decide for sure but at my age they would ‘throw everything at it’.
I was in total shock. I tried contacting my husband but I knew he was in work and may not be able to answer. My eldest daughter was on Jury service so I couldn’t phone her and my Mum is a big worrier so I didn’t want to call her. I set off to drive home but was in floods of tears and had to pull over. I then realised I had not checked in at work so I composed myself and called my boss. I was trying to stay calm but broke down as I tried to tell him what had happened. He was very understanding and told me to go home and not be worrying about work.
After the initial shock I was then given confirmation of the results a few days later and after that I was immediately into the medical process of treatment. I felt like I was never away from the hospital, if I wasn’t having a scan or seeing the Oncologist I would be having Chemo. Chemo had a massive impact on me. I couldn’t carry on with work due to the infection risk. I lost my hair which was long and curly along with my eyebrows and eyelashes. I became diabetic (I had suffered from gestational diabetes with my younger children) and at one point I became Neutropenic and had to be hospitalised in isolation for a week on an antibiotic drip and not allowed visitors except my husband. I was also mis-prescribed antibiotics at too high a dose by my GP and had an anaphylactic shock whilst on a much needed weekend away with my husband.
Following Chemo I had a full radical non skin sparing mastectomy of the right breast. I wasn’t that bothered about the mastectomy and to be honest that was easy compared to Chemo. I recovered well but the lymphoedema kicked in very quickly after surgery.
Because I had chemo before surgery I didn’t get referred for any of the normal support services such as therapy groups at the local hospice and wellbeing services. I eventually got referred in after surgery and this service was fantastic for helping me recover my mental wellbeing. Radiotherapy was pretty exhausting having to go back to the hospital daily for 2 weeks for treatment.
Then it was all over treatment wise and I had to start thinking about returning to work. I had to go back before I was ready for financial reasons. Work was very stressful once I was back full time and after a few months of coping with an unusually demanding period of change I found my mental health began to suffer. I had a bit of a breakdown and found myself crying on the phone to the breast care nurse who told me that I had ‘hit the wall’ she said this is perfectly normal for a patient who has been through the cancer journey and it was amazing that I had managed to cope for so long without needing their help and support. I was referred for some counselling and I quickly recovered.
Having cancer is a rollercoaster. When someone tells you that you have cancer you immediately think you are going to die. Initially you are thrown into a ‘medical machine’ and you have a sense of purpose just trying to get better. During treatment you do have moments of extreme emotional turmoil when you imagine the worst but it is after treatment that you begin to fully process what you have been through and that is when it really hits you. My experience was a good one in terms of the support available and it is recognised that there is more to recovery than just medical treatment. There is now a lot of work going on to help recovering cancer patients with their mental wellbeing and physical health after treatment ends.
I was not allowed reconstruction straight after my mastectomy and I was not sure I wanted it but after the obligatory 2years wait I felt that I would feel better if I could feel more like the old me so I had a Diep Flap reconstruction. Thankfully I had enough ‘baby belly’ to form a new breast so I got a bonus tummy tuck as well !!
One of the main things I have learnt from all of this is the importance of living in the ‘now’. You need to be kind to yourself and to take joy from the little things. So after treatment I wrote a bucket list as I was not sure how much time I might have left because IBC has a high rate of recurrence and if you get to 5yrs that is a good sign. Well I very happy to say I am now 6yrs post diagnosis and I finished the bucket list already. I count my blessings and sometimes I feel grateful just being alive. There isn’t much that can phase me now.